Non-Prescription Supply Program ACT1 is one of the few organizations in the U.S. that provide a non-prescription supply exchange program for diabetics in need.
To find out more information and see how you can help ACT1's effort in serving the community click here!
Secure Supplies: Test Strips Save Lives – Tell Roche Pharmaceuticals To Expand Their Patient Assistance Programs! Join our campaign and sign the petition that tells Roche Pharmaceuticals that test strips save lives!
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The B U Z Z around The D O C
First, Kim V started a campaign that I love and can’t wait to have a few free minutes to participate in. Her project is called:  It’s such a fabulous idea and so simple. So what do you have to do to get involved? Just tell it like it is. Video yourself talking about your experience with D, then put the link to your video up on Kim’s blog, Textingmypancreas.com . All the details can be found on Kim’s site, she is much better at explaining this than I am. Kim’s not looking for a happy rainbows and cupcakes type of video. Just tell it like it is, the good the bad and the bloody. Show everyone that regardless of the bad times, THEY can do this, WE can do this, YOU CAN DO THIS!! I know when I was diagnosed at 21 I would have truly benefited from this project. People telling the truth, no “sugar coating” (sorry I couldn’t resist lol), just telling me it will be hard but then seeing the strength of people who live with disease. Wow!! Anyone who lives with D in any way, Type 1, Type 2, LADA, or even those who care for a PWD are welcome to join in.
Also ACT1 Diabetes (yes that’s the site you are already on) is asking you to sign a petition to tell Roche Pharmaceuticals to expand their patient Assistance program. This is a great cause and you don’t even have to go anywhere else to add your digital John Hancock. Just look at the left side of the screen (yes, now) and you will see a link to the page “SECURE SUPPLIES: TEST STRIPS SAVE LIVES”. So, if there is some reason you don’t see the page just click here: Sign Your Name Here. Can you imagine knowing that testing is vital to your health and not being able to afford the supplies you need to do it? I can. I was uninsured for almost 10 years and it has cost me dearly in the form of complications.
If the above campaign leaves you thinking about all the extra supplies you have at home that you know will just wind up being tossed when they expire, maybe you would consider contacting supplies@act1diabetes.org ACT1 runs a Non-Prescription Supply Exchange Program. I would love to say that our donations exceed our requests, but I’m afraid the opposite is true. However, we still take requests and do our best to help everyone as quickly as possible, just go here to our intake form.
 OK sugar is now 66 so I am done. Hopefully, the next post from me will be my video for Kim’s project :)
This whole pump vacation thing is sort of like skydiving, minus the thrills. You hem and haw about the decision to go for it, freak out a little bit (see: my last post), feel nervewracked about the whole thing right up until the moment when you DO IT and then it’s no big deal. Well, I actually haven’t gone skydiving yet, and I’m sure that jumping out of a plane is more exhilirating than taking shots of insulin, but….that’s the comparison I’m going with. (And speaking of jumping out of planes, did you know that my buddy Martin went skydiving to celebrate his 30th diaversary? Rad!)
Anyways, after much weeping and gnashing of teeth, I peeled off my 3-day-old infusion set last Wednesday night, removed my pump’s battery, and matter-of-factly stuck it in my dresser drawer and went off to enjoy a shower free of sticky things to scrub around. Upon waking up the next morning, I reflexively reached for my pump to clip it to my waistband and hop out of bed….until I realized that there was nothing to reach for. And oh! The feeling of a dress swishing around my legs without a pump strapped to my thigh! How strange and delightful! Maybe this will be really great,I thought on that first day as I sashayed down the streets of Brooklyn, skirt whipping in the warm wind.
And one week in…it’s still going pretty well. I have mostly gotten used to the feeling of empty pockets, garterless legs, and waistbands free of devices that could be mistaken for a pager. I rolled around in bed for the first time in ages, luxuriating in not having to move a device out of the way every time I shifted. I can pick up my purse without thinking about carrying it on the opposite side of my pump infusion set. And I just might have done that aforementioned I’m-not-attached-to-anything dance.
The only thing to make it complete would be to find a Casanova to rip my clothes off in a fit of passion…because I wouldn’t have to stop him to declare, “Contain yourself! I have to unhook myself from this $6000 piece of medical technology.”
I already see a difference in my blood sugars: the average has dropped from around 180 to around 150. Unfortunately, lows contribute to that…including three under-50s one delightful 24-hour stretch. But it’s evident that the insulin is working better. The other positive to this pump vacation is that I’m logging like a FIEND. The problem with pumping is that, because the pump and meter stored my basic information on blood sugars and insulin doses, I never bothered to keep track of the many variables of my diabetes life. (Also, I use a Mac. Which 75% of diabetes tech companies seem to have a grudge against. Did Steve Jobs make a deal with the devil or something?) Now that my insulin doses will vanish into the ether of my memory if I don’t write them down– and because I want to make this transition as successful as possible– I’m finally busting out the OnTrack Android app I downloaded six months ago, and using it for the first time.
(Tip for my fellow PWDs: OnTrack is great. It’s quite easy to enter info on BGs, medication, exercise, and food. You can customize settings and add notes when necessary, as well as export the data in a variety of formats. Also, it’s free! I recommend it.)
Of course, the transition presents its challenges. I’ve had a lot of spikes and crashes, and I keep wishing that I could program adjustable basal rates on my two daily Lantus shots. I split my Lantus dose to prevent the dawn phenomenon, and yet I’m always waking up high (even if I go to sleep with perfect numbers). And sticking myself with all these needles takes some getting used to, especially given that I did it for just a few months before pumping. Sometimes I feel nothing, sometimes it’s a slight prick, and sometimes it’s like, “AAAIIIIEEEEEEEE WHERE DID ALL THESE PAIN RECEPTORS COME FROM?!”
I also can no longer call myself a cyborg. Woe.
So for those of you on shots, I want to pick your brain: how do you deal with the dawn phenomenon? Do you have a system for rotating injection sites– or do you, like me, go mainly based on where you can discreetly inject without rearranging half of your current outfit? Is Lantus supposed to burn like a mofo when you shoot it up, or am I doing something wrong? How do you keep your pens cool in the heat? And what about air bubbles in the pen?
For others in the know: I now have pump supplies and regular insulin vials that won’t be much good for a while. What’s the best way to donate them to tornado victims in Joplin? Or would they be more needed elsewhere?
For anyone else: thanks for your good thoughts and encouragement! Please keep it coming! And please send some to Tina, after her heart-shattering post before mine.
And for everyone: who can help me find my Dexcom charger and that Casanova…?
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!
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