Here are my latest additions to my never ending list of "Diabetes Needs."
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I need Test Strip & Insurance companies to consider the margin of error when it comes to said test strips and what those said errors cost the consumers.
And by "margin of error," I mean several things. Things like the skunky test strip factor and the "Error" message that shows up sometimes for a multitude of reasons including; lack of blood or the the drop of blood being applied to early.
There are also annoying messages like "NOT OK" that gives no reason at all and make me want to scream.
Then there's the whole "law of test strip averages" form of testing which requires the user to u use two or three test strips because there's no way in bloody hell that the first reading is right, so we must test again and bolus for the combined average blood sugar.
For example: Blood sugar 1 is 187, But you swear its lower, so you test again and blood sugar 2 is 159.
187 +159 = 346. 346 divided by 2= 173. Depending on your last meal, the correction bolus between 187 & 173 can be enough to make for an extreme low and or an extreme high later.
All of the above factors cause us to use more test strips, which is good for the supplier of the product, but not so fantastic for the end user of the product.
All of the above factors also causes major arguments with insurance companies who limit the number of test strips that they will cover.
Apparently the term: SHIT HAPPENS, doesn't cut it for most HMO's.
Bottom line, I need my diabetes GPS system to work consistently and be right on Target, my health depends on it!
I need (and would really appreciate) if the makers of Glucose tabs would icksnay on the uber hard to open childproof protective plastic wrap that their unopened products are ensconced in.
I know that the containers have to have some form of protective plastic wrap, but when my blood sugar is low and I need me some Tropical Fruit flavored glucose tabs, I need to actually be able to open them, ASAP. I fumble enough when my bloodsugars are low, I shouldn't have to fumble with the packaging for the product used to treat my low.
Now, whenever I purchase glucose tabs, I remove the protective plastic seal immediately, before a low occurs.
Sometimes I buy glucose tabs in bulk (especially when they're on sale) and go ahead and call me crazy, but I don't want to open every single container glucose bottles/10-pack tubes at once. According to a very reliable source named Scott Strumello, good news regarding said glucose tabs is on the way!
I need restaurant chains to list the carb content of their food dishes, not just the fat, calories and fiber content. Calories won't help me to bolus for your food properly, but a correct carb count will.
I need doctors and health care professionals to talk with and too me, not at me. I need them to be willing to work with me regarding my disease. And I need and would very much appreciate if they took the time to listen and consider what I have to say about my diabetes, becuase I'm the one who has to live with it 24 hours a day, 365 days a year.
I need the media to stop getting diabetes wrong - And like you, I'm working to make that happen.
I need a diabetes cure for so many reasons that it makes my head spin a la Linda Blair. But at this moment in time I need a diabetes cure because I'm just so tired of having diabetes.
But enough about me - What are your diabetes needs??
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16 comments:
Great post and I agree with all of it!!
If I may add... I'd appreciate it if pumps didn't have such ambiguous errors (unable to communicate?! etc). I'd also appreciate it if a certain pump company might consider something less than several hundred button pushes (or so it seems) to get the required insulin pumped into me.
Totally with you Kelly, especially on the test strip thing. At 10pm when I test my daughter and she's 85, then I test again and she's 120 - what the heck am I supposed to do? I do NOT understand why is this age of uber technology, where we can make computers small enough to fit on the head of a pin, that we can't get testing equipment that is accurate. A 120 should be a 120, not something between 80-140! I could write a whole blog myself on the things I'd like her insulin pump to do that it doesn't. Maybe I will...
I need to NOT have to fight the insurance company every single time my daughter needs refills, new scripts etc. She's 19 but I still do all that for her (as she said; OMG mom. I cannot imagine when it comes my turn to do it) Why do they think getting d supplies is some kind of thrill we are trying to sneak by them?? Grrr!
I'd like more than a 5 foot read from sensor to transmitter on Joe's sensor please!!! It would be sooooo helpful to me (as his pancreas) while he plays hockey and whatnot.
Great post.
The cost of the strips is of great concern. Every other single bit of technology has gotten cheaper and better. Remember calculators? digital watches? Remember what a vcr used to cost and what it could and couldn't do?
What possible explanation could explain why test strips are just as expansive and unreliable as ever?
Justin
Ugh how I feel you on these things. I NEED a lot of things. A cure would the best OF COURSE! I have so many needs that I don't think I could list them. I need pharmacy people to actually read my Rx and not give a vial when it should be a pen, and not take 4 hours when they said 15 mins, I need doctors to actually be open 24 hours not just 9-5. I need diabetes to follow the rules and stay in range, I need people to stop asking me annoying questions and educate themselves. I need so many things, that sometimes just thinking about what I need (or I want I guess...) Makes it harder to tolerate.
I need space engineered pumps. For a pump that costs lots of thousands of dollars, I expect quality plastic! As well, at the cost of test strips I expect greater accuracy. If they aren't going to be accurate then lower the damn price.
'nuff said.
definitely with you on the uber-wrapping - I sliced the sh#t out of my thumb once attacking a roll with a screwdriver while low. Maybe if I had sued it would encourage them to change the wrapping :)
also, my very own pet peeve: I NEED someone to make a test to tell you how potent your insulin is! Going thru 4 site changes and a dozen strips before realizing you are pumping dishwater just sucks!
So with you on the carb counts on menus!
I need Bean's school to have a full time nurse...not only for her, but for all the kiddos who need one and so that the TA and Secretary can do their OWN jobs!
I would love to know what the alarm codes are on the Omnipod...not that I can do anything about a mechanical failure, but it drives me freakin nuts to not know why that lovely pod that's been on her for less than 24hrs is letting out that terrible beeeeeeep. And the pod after that (17 hrs) and the one after that (32 hrs).
I need a CGM alarm that I can actually HEAR when Im low at night and its buried under the covers. 8c juice boxes would be FABULOUS, as would a lancing device that magically changes the lancet so I dont have to remember :)
What would be
a-m-a-z-i-n-g is a pump we custom set up our own programming to OUR needs/wants (like a computer program!)such as a reminder if a meal is late and nothing has been bolused! Maybe a smart pump that can help you determine additonal insulin needed for high protein/fat meals? Ahhhh....could you imagine?
Ah, yes...this makes me think of when I was re-ordering my pump supplies and the guy on the other end said, "10? You test yourself 10 times a day? Wow..." Yup was my short answer. Clearly, the guy does not have D...
I need a tougher pump. I've cracked three of them, the last time without knowing it while I was in Belize. I didn't know it had a crack until it filled with water...that made the rest of the trip really interesting, tests every 2-3 hours followed by shots.
I also need medical professionals who HAVE diabetes. I understand, on an academic level, that I should theoretically be able to have much tighter control. But 2 plus 2 doesn't always equal 4 in diabetes and I am tired of feeling like a failure every time I visit the doctor.
Hey K2, the good news is that Can-Am Care has heard PWD complaints about Dex4 pkg (and the various pharmacy brands they supply), and has package revisions in the works. Catch my post at http://goo.gl/m01ma for details.
Not only do I need all those things? I need all you guys most of all
Great post, Kelly. So on board with everything you point to. I'm also in desperate need of rational, understanding people on the other end of my phone - whether it be a doc's office, insurance company, or medical supply company. These are too often in short supply.
My need for diabetes is for people to get, know and understand the difference in type 1(me) and type 2(them). We are not the same. I didnt have a choice. They often do and can drastically change their diabetes(and life) with diet, exercise and medication. Me? I'll be doing this forever. Forever meaning when they find a cure.
And the error for applying blood to a test strip too fast, irrittates the hell out of me. It can read that tiny drop of blood in 5 seconds, but it takes 30 seconds for it to read the code on said strip? Technology FAIL.
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