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I have been extremely out of the DOC loop lately. Partly because of health, partly because of my life that isn’t health related. So being pretty much confined to my bed today I have been reading DBlogs. Trying to reconnect with my friends, whose lives really do matter to me. When I came to Kelly Kunik’s blog over at diabetesaliciousness I came across the “I Can Do This” project started by another DBlogger, Kim Vlasnik from textingmypancreas. It’s a great project and I will be posting here about it next week to get ACT1 involved.
That being said, I CAN’T do it today! I can’t deal with my D at the moment. I can’t say D does not define me because in my case it does. I am so burnt out I can’t function. I am tired, physically and emotionally drained. I have been crying at the drop of hat these days so please forgive any typos or ramblings because I do not plan to edit this post. I am afraid if I do I won’t have the courage to put this up. I hate complaining but I need to purge some of the crap rolling around in my head. I will save some for the project though and hopefully when I do that I will be feeling better and be more positive. I know this is the worst time for me to feel this way. Kim is doing something wonderful and I feel like I am ruining it 
I was diagnosed at 21. Nine months before I had just met my wonderful boyfriend and really felt hopeful and confident that my life was going to finally change. Boy was I right, it just wasn’t the change I had in mind. Life got better in a personal way but then I started losing weight and feeling like crap and then came the diagnosis. So yes, life changed, for the worst. I am not in a happy positive mood so let me be real, I hate my diabetes!!!!!
The last 17 years have been filled with hospitalizations, near death lows and highs, the bafflement of the doctors around me and a number of complications. All the while I have tried to do my best. I test like my life depends on it (well it actually does lol), I see 8 specialists plus my General Practitioner, I read and try to understand all I can about D, still it doesn’t get better.
I have had hypo-unawareness for years. I have no idea most of the time that I am going low. I tried wearing a CGM but it just never worked right. So instead I test and I test and I test. That’s my routine and I rarely change it.
I tested yesterday and it didn’t stop me from losing 45 minutes of time. I was shopping in Michaels and tested at 1:03 PM, I was 164 (not making these numbers up, this is the real deal). I tried to use my phone at 1:15. That’s the last memory I have till 2:06 when I realized I was sitting on the floor in a totally different section of the store with an empty juice box in my hand. I got up and found two more in my cart. I tested and I was 53. WTF!?!
Yes, I am aware that I have been through this before. If you have ever read any of my posts it’s likely you have read one about a low because they are such a part of my life. This is nothing new. Still, when I found that my Iphone was gone I got really upset. I looked everywhere, asked everyone and still have no idea what happened to my phone. My wallet was there so it’s most likely I put the phone somewhere. I just don’t know where. I came home and cried hysterically. I apologized to my boyfriend and cried some more. (this is by the way the second IPhone I have lost to lows, so in some way the tears are for the phone, lol)
My boyfriend kept telling me that it’s only a phone and I shouldn’t be so upset. However I knew it wasn’t the phone, it was the D. I just takes and takes and takes. It’s like The Hungry Caterpillar. It just never stops eating at my life. I am so sick of it! I am done with this stupid disease!!
Don’t worry I am well aware that I can scream and yell and cry and that none of that will take it away. I know I can’t truly stop being a D. I just wish I could. Saying it out loud sometimes helps, though I know it scares people. I don’t mean to do that. I try to remind myself that someone hospitalized for depression and attempted suicide cannot say these things without getting some raised eyebrows. Sometimes I just need to blow off steam from this monster called D. I wish he would go live in my closet with all the other monsters and just come out sometimes like all the other good monsters do. Is that really too much to ask?
So how does one hide from D? If you know how to do it without killing yourself, please let me know. I can’t hide, I can’t fix it, I wouldn’t wish it on my worst enemy. So I guess I will just continue to cry and scream and wail and then I will get up and test, I will make all the doctor appointments I need. On top of this I will pray, that someone, someday will find a cure. Oh and maybe till then, just a week free of health stress.
All has been quiet on the blogging front for me lately. Sadly, I’ve been going through an unhappy breakup. Lots of anger. Plenty of tears. Maybe some chick flicks. But the Ben & Jerry’s has been replaced with copious quantities of cheese.
My friends, I am breaking it off….with my insulin pump.
We have been having a boatload of issues lately. For five solid weeks in March-April, half of my infusion sets leaked. After a day or two, my blood sugar would mysteriously spike, and when I checked the site I would feel the tell-tale damp spot and smell the antiseptic aroma of insulin.
After the first couple sets, this was usually followed by an eyeroll and a quick replacement.
By the fourth site failure, I was starting to hiss profanities.
By the sixth, I called Animas. Their only solution was to mail me replacements. An Animas nurse manager I work with came over to give me tips on insertion. It only resulted in….another bad set (one that gushed blood, to boot).
By the eighth failed set, I started crying, and I hate crying in public. After leak #9 caused a meltdown in Union Square, an hour away from functional insulin delivery and with errands to run, I started tossing backup syringes in every bag and desk drawer I could think of.
I called Animas again when I rolled over to double digits. The customer service rep was very gentle when she heard me whimper over the phone how at least ten of my infusion sets– different types, different boxes, different areas on my body– were leaking. “I just don’t know what to do,” I told her. “I love my pump, but it’s been giving me so much trouble for months and making me feel sick all the time.”
“Well, we know you’ve been pumping for a while, right? So it’s not that you’re new and don’t know how to insert an infusion set. And you rotate well, so it’s not a problem area of your body. And we’ve established that the infusion sets come from different boxes, so I doubt it’s a manufacturing problem,” said the rep. “What is probably happening is something called tunneling. Since you’ve been on a pump for several years, you’ve probably developed scar tissue. Sometimes scar tissue causes the cannula to kink, and sometimes the insulin doesn’t absorb– so it backs up through the cannula…”
“…and leaks out,” I finished. “Or something.”
“We can send you four more replacements, but after that…..it’s probably a problem with scar tissue,” she said. “You’ll want to think about changing the type of set you use. What about the Inset 90 degree sets, instead of the 30s?”
I sighed. “I stopped using those because of scar tissue and kinked cannulas.”
So I wrung my hands a lot, talked to the women of ACT1, got prescriptions from one of my doctors, and picked up Lantus and Novolog pens at the pharmacy. By the time you read this, I will already be disconnected. I know lots of people switch between pumping and multiple daily injections, and that it’s really not a big deal when tornadoes are raging and bombs are exploding and Oprah is signing off from the airwaves. But it really does feel like a breakup. I enthusiastically signed up for the pump not even five months after diagnosis, and have been continuously attached to one since then– 7.5 years, to be exact. (Isn’t that longer than many marriages? Would that make this like…a divorce?) There are a lot of features of the pump I love: the convenience, the discreetness, temp basals and combo boluses and always knowing what time it is.
But it’s been mighty upsetting these past few months to have it fail on me, time and time again. Riding the F train home to change my set, swallowing back tears, I thought: this is medical equipment. My health and well-being depend on this technology working. Why is it making me SICK? Exhausted, thirsty, nauseated, over and over again. Failing to take care of my responsibilities for Alpha Phi Omega because I conk out as soon as I get home. Falling asleep during my cousin’s First Communion party because my blood sugar was in the 300s. Losing productive time at work because I feel like bollocks. Would you accept a phone with a 50% failure rate? Or if your laptop didn’t work half the time? I thought. WHY SHOULD A LIFESAVING MEDICAL DEVICE BE DIFFERENT?!
So my lovely blue Animas Ping is tucked away in my dresser drawer until further notice. I’m going to get reacquainted with MDI at least through June, unless something goes horribly awry. If you could send up some thoughts and prayers that my body heals and the transition goes well, that would be fabulous. If you have ever gone on a pump vacation, or permanently switched– I’d love to hear your experiences and advice. If you’re one of those lucky ducks who can keep infusion sets in for a week or have pumped continuously since Milli Vanilli was popular, then color me jealous.
“You should do an I’m-not-attached-to-something naked dance,” remarked one of the girls as we were leaving the ACT1 support group meeting.
I guess there are always upsides to breakups, right?
*The publication of this blog is being released after some technical difficulties with ACT1′s website. Our sincerest apologies go out to all our readers
Happy Belated Birthday to our Caroline!! And without further ado… *
Happy Birthday to Me!
Today is my birthday!
I’m celebrating 25 years of existence, which feels old even though the majority of people I talk to smirk and say, “Twenty-five! You’re just a baby!” I won’t have a cake with candles, mostly because my mom isn’t around to bake our magnificent passed-down-for-four-generations chocolate birthday cake…..and because my baking skills definitely don’t yield anything bolus-worthy.
But if I did, what would I wish for? I’m going to break superstition and tell you my birthday wishes for the upcoming year. Who knows, maybe you can help make them happen…?
First off: I wish for a cure to diabetes! Which is probably as likely as unicorns falling out of the sky or Donald Trump not being crazy, but a girl can dream, right?
Until then, I wish for significant advances in the Artifical Pancreas Project. And that, if all my bloodwork ducks are in a row, I’ll be one of the test patients for this!
I wish for another year without need for glucagon, EMTs, or any frantic ambulance rides.
I wish for another really awesome marathon in the fall, with equally awesome blood sugars to propel me through 26.2 miles faster than the last time.
I wish for ACT1 Diabetes to continue growing and thriving as an organization, reaching out to enrich the lives of diabetics all over the country. And I wish to have a part in that!
And of course, I’ll make the precautionary wishes: no dead-in-bed syndrome, no getting hit by a bus with boring underwear on, no cardiac arrest while running the aforementioned awesome marathon, no getting eaten by velociraptors…..in general, no nothing that will keep me from reaching my 26th birthday.
How many candles does that add up to? And then how many more do I have to add in order to wish for a job for my sister and a happy wedding for my stepsister and some rockin’ progress at my job and a jaw-dropping experience at all the U2 shows I’m seeing this summer and a joyful reunion with my BFF Marisa at one of said U2 shows and world peace and cupcakes for everyone?
Nah, don’t answer that one. That could be a fire hazard. Then again, burned chocolate cake probably would taste better than anything I could bake….
PS. In all seriousness, if you’re feeling compelled to give me stuff for my birthday (besides the artificial pancreas or Bono, of course), then please direct your goodwill towards the Red Cross and donate to their Japan relief fund: https://american.redcross.org/site/Donation2?5052.donation=form1&df_id=5052&idb=0 THANKS!
Filled with vivid memory of diagnosis, here’s Tricica’s story…
As I approach my 32nd year living with the big D, the day I was diagnosed always brings a myriad of emotions, and sometimes just an empty feeling. For me, this time of year has a “strange” feel to it. Don’t get me wrong, I have always loved spring: new flowers budding, birds chirping, warmer weather, bright colors and all that fun stuff….and a diagnosis that forever changed my life.
I do have memories of that time, some more vivid than others. I was in kindergarten and the Easter holiday was upon us. I don’t remember too much the days preceding Easter. I do, however, remember Easter Sunday. I was very tired and had an unquenchable thirst that would not quit. I also remember wanting to just lay down on my grandma’s couch and nap, which no one would let me do! I remember the adults whispering to one another, which seemed weird to me, it usually meant it was not for my ears. My mom told everyone we had a doctors appointment the very next morning, so I guess this awful feeling I was enduring would be taken care of at that point.
Fast forward to the next day, we trekked out to our family doctor in Queens that we were still seeing, even though we already made the move to Long Island. I remember that was probably the last time I saw him as a patient. I felt as though it was a chore to hold my head up straight, I was tired, hungry and thirsty beyond belief, even worse than the day before. My mom described all the “classic” symptoms of diabetes that I was experiencing, the doctor took one look at me and said: “is this child on insulin?” My mom shrieked, and I’m sure I had a thought to the effect of “wow, that can’t be good.” At that point I was clueless to what I was in for.
I would learn very quickly about how insulin was to become my new best friend. The next vivid memory I have is being restrained. Arms and legs, taped to boards, and pretty much what felt like tied down. I remember a nurse probing my ankle for blood, my parents were asked to leave the room, which only made me cry even more. I had no idea what was going on and more importantly, why. What did I do that was so wrong to deserve this? I begged for water, but all I was allowed were ice chips. I was desperate, so I took them.
I’m not sure how long I was actually in ICU, if you would have asked me back then it felt like a month, maybe more. In reality, it was probably a few days, at most. Being an only child, and never away from my parents before, I’d have to say this was pretty scary for me. The first night I remember not being able to sleep after my parents left. I remember the nasty nurse who was mean to me, I was so scared that I was afraid to cry for fear she would yell at me even more. At that point I wanted to be a nurse when I grew up so I could be nice to kids in the hospital who had to be stuck with needles like I was, because it was a scary place to be.
I also remember my grandparents bringing a Holly Hobby rag doll for me to hold, but I couldn’t open or hug my new found friend, because my arms were taped down. Things got much better once I was moved to the children’s floor. In fact, I loved it there! No more being tied to an IV pole! No more scary nurses! There were so many toys there that I didn’t have at home and other kids to play with, it was great! I remember an envelope of cards my kindergarten class made for me. Lots of colorful “get well soon” cards from my friends made me feel good.
I’m sure it was scary for my parents because they were learning all the in’s and out’s of diabetes and what to do once I went home. I learned to test my urine and became an expert at it! (the dinosaur test that used test tubes and tables, how far we have come! haha) I remember when asked if I would miss the hospital, I replied “yes” because I liked most of the nurses and other kids there.
I try to reminisce and think of all the details I can remember around the time of my diaversary, and recall it as often as I can. It helps me to see how that was a huge part of my life and how much my life changed because of these events. I sometimes wonder if my childhood was shortened, did this experience make me grow up quicker? How much different would my life be now if it never happened? All those questions we ponder at one point or another….
One thing I do know….April 16, 1979 changed my life forever. While I wait in hope for a cure, I do not regret the diagnosis and would not change it for the world. It has made me who I am today and brought some of the most wonderful people into my life, and for that, I am forever grateful
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Today’s blog is written by Eliot. It is truly something all Ds can relate to. Great post Eliot!
A Diabetic can work with the same people for years. Then you get to a place in your life where you want to take care of you, but to do so you need to inform your co-workers that you have diabetes. When you’re having a reaction then you need their understanding and help so you can take care of it.
Now that you have told them…the cat is out of the bag and you have “police” everywhere. At the birthday party for a co-worker, the question asked is not, “What size piece would you like?” Instead it is, “Aren’t you not supposed to eat sweets?” Or you’ll hear, “I’ll just give you a little piece because you’re a diabetic.”
Despite this behavior, I do think telling your boss and others around you that you have it is a good thing. This is important so that you can take care of you and your health appropriately when you have a reaction.
This wasn’t my first experience with the “diabetic police” nor will it be my last.
So the date is February 14th 2011. Yep, Valentine’s Day…chocolate and candies everywhere. There is always one in every office, “the know it all,” overbearing mother. Well, this particular Valentine’s Day I was at the office and what do I see in my mail box but a small box of chocolate. When I say small, I mean small: one miniature Hershey bar and 3 chocolate kisses. But hey, someone thought of me and I was happy to have gotten a Valentine’s gift.
My eyes glanced left to the mailbox next to me. There I see a big box of candy. I glance to the right and lo and behold, another big box of candy. Everyone has a big box of candy but me! Imagine: 20 mail boxes at work filled with large boxes of candy. Oh, make that 19 mail boxes of candy. LOL :0(
Gee I wonder if they are all from the same person and guess what? They were! Wow, I didn’t see that one coming from a mile away.
I love chocolate but that wasn’t quality chocolate in my mailbox. If I am going to play with my insulin for a treat, it better be worth the calories. On Madison Avenue and 78th Street there is a place that I like to call chocolate heaven also known as La Maison Du Chocolat – best chocolate ever; pricey but worth every cent.
So, on with the show – and what a show it was. Later that day, the nice woman who put all of those boxes of candy in the mail boxes came up to me (and for arguments sake, let’s call her Lady X). I saw her coming, making it a point to catch me as I was walking in the hallway at work. She stopped me and said, “I just wanted you to know that I gave you a smaller one because I know it’s not good for diabetics to have sugar. But I didn’t want you to feel left out.”
My internal thoughts were that I should thank her for the gift was….followed by, “You stupid b**ch! So you thought singling me out was better then leaving me out of your BS.” I smiled, said nothing and walked away while rolling my eyes.
I mean Good Grief Charlie Brown, I thought to myself, and then let it go.
So I forgave Lady X for her insensitivity because why would I let anger ruin my day? She is not a diabetic and doesn’t understand what it’s like for me – and never will. My time is very valuable to give to a lay person.
In the end, all “diabetic police” mean well but they don’t realize the damage they can do on many levels.
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