Tag: diabetic life


#13: things that make a t1d scream!


Advisory:  this post is likely to contain ranting and growling.  You have been warned.

So I am on my last bottle of test strips.  Like, halfway through it, matter of fact.  I get my pump and testing supplies from a mail order company.  Most brick-and-mortar pharmacies don’t carry such things, at least I’ve never experienced that in our area.  I have ordered from this one company as long as I’ve had my pump, so over 12 years now.  I’ve had various insurance companies in that time and never had a problem.

Until now.  The supply company will usually call about a week before delivery is scheduled to make sure of what I need them to send.  I got that call about three weeks ago.  All I needed on this shipment was test strips.  Fine, they say.  Two weeks later and no strips.  I call to see what’s up.  I’m on hold off and on for quite awhile.  The lady seems confused and finally tells me someone from shipping will call me.

The next day, I get the call and am informed that the company (CCS Medical, for clarity) is not contracted with my “new” insurance (new since January!) and I’ll have to get supplies elsewhere.  When I asked for some suggestions, I was told, “Call your insurance company.”

So I did.  That lady seemed a little confused too or at least she had problems finding any suppliers for me to contact.  Finally, she gives me a company, Liberty Medical (of all places!) so I hang up with her and call the number she gave me for Liberty.  I’m on hold forEVER listening to the endless “We will be with you shortly” messages until suddenly the message changes to “If you’ll leave your name, number and info, we will call you back.”  Okay, so I did that.  Two days later, NO call back.

I’m pretty ticked by now, as you might imagine.  I go online and send Liberty an email.  The addy is something like libertycares[at]liberty-blah-blah-blah… yeah.  I’m not buying that!  I have STILL not received ANY response whatsoever!!

I am fuming now, so I call the lady at my endo’s office who sets patients up with new pumps, CGMs and checks insurance coverage for such things.  She was supposed to be seeing about getting me a Dexcom CGM since this new insurance is supposed to cover them.  (more about that in a moment)  I dial in her extension directly and get her machine.  I leave her a message with the info, letting her know that I’m going to be completely out of strips soon.  That was around 10 am, so I really expected to get a call back, but nope.

Next day, I wait til after lunch and call the office again.  This time I dial the DNE (Diabetes Nurse Educator) who happens to be my endo’s wife as well.  Her message informs me that she’ll be out of the office til Tuesday, but I leave a message for her anyway in case she’s checking them while she’s gone.  Seriously, this office has always been great about returning calls so I am really puzzled by the lack of communication from them.

I then hang up and call right back to leave basically the same message for my endo’s assistant.  I make sure to tell ALL of them that I am going to be OUT OF STRIPS soon.

For those who don’t get this, test strips are crucial to knowing what’s going on with my sugars, to deciding how much insulin to give or how much to eat/not eat.  They basically tell you what you need to do to keep your diabetes in good control.

angry face

Yes, I can go buy them out of pocket, but I would MUCH rather not have to do that, as you might imagine.  I HAVE blasted insurance for this very reason!  ARGH!!

So, I STILL have no contact, no response from ANYONE and I’m skipping tests to try and make these stupid things last til Monday hoping that SOMEONE SOMEWHERE will flippin’ contact me and get this straightened out.

I am SO mad you can’t even imagine.  WHY do they do things like this?  From stupid CCS (who could have informed me instead of just not sending the shipment) to Anthem who could have been a lot more helpful in making sure I could get my supplies to flippin’ Liberty which is a total fail in the customer service department and who I will NOT do business with if there’s any way around it.  And now my endo’s office!??!  SERIOUSLY, PEOPLE?!?!

screaming man

Sorry for the rant, but this is so unnecessary.  If these industries were TRULY for the patients, this wouldn’t happen.  I guess I’ll be heading to Wally’s to pick up some cheap-o generic strips til I can get someone to do their job out there.  sigh

Happy Mom’s day & have a great weekend!!  🙂

Blessings,

G~


frankly friday: how about an inhaled glucagon?


spine

Say what?  Yes, I just read about this new stuff that could be coming out soon.  Instead of depending on someone who is with you knowing how to mix and inject a traditional glucagon pack for you, they could just spray it up your nose!

Locemia Solutions

That’s a pretty awesome idea!  This company who’s been doing research, Locemia Solutions, has basically been working in secret on this stuff but is now sharing that they are ready to apply for all the FDA crapola to be put on the market!

For those of you who don’t know, THIS is the current and ONLY method for delivering glucagon:

As you can see, it’s NOT a simple task even for someone who’s used to drawing syringes and giving injections!  And realize that glucagon is an EMERGENCY measure.  It’s meant to be administered by whoever is near you when you are unconscious or unable to eat and drink on your own because your blood sugar has gone extremely low, so if that person or persons don’t happen to know you’re a diabetic, or even if they do, chances are they won’t know what to do with this stuff.  There ARE detailed instructions inside the case, but seriously, do YOU wanna depend on someone in a freak-out moment doing it all right and possibly saving your life?

Me neither!

About the worst they could do giving a shot of spray in your nose is give you a nosebleed, right?  And how much less freaked-out might they be having to do that instead of mixing, drawing and giving an injection?!  Let us know, any non-T1Ds out there…which would YOU rather do for your friend or loved one?

This was especially close to home for me this morning because last night, I did it again.  insert furious face here  I have had my pump for about 12 years now.  I have NEVER taken a break from it, never opted to go back to MDIs (multiple daily injections) for awhile.  Getting that thing really saved my life, and as much as I hate it sometimes…like when the tubing gets hung on a doorknob as I’m working in the house or when I’m struggling to find a comfortable place to wear the thing with some more fashionable clothing, I wouldn’t part with it!

Maybe that’s why it’s such a habit for me to just press that button and dose without stopping to think sometimes.  That’s pretty much what I did last night.  Yes, again!!  I was SO angry with myself that I probably shot it a bit lower just from that emotional surge, ya know?  (Tell me I’m not the only one who does that…intense emotion can drop my sugar!  Do any of you experience that??)  I was up watching TV by myself since Tommy had gone on to bed.  He’s staying super-tired from all his projects out in the garage so after trying to settle in with him, I found I just wasn’t sleepy yet and thought I’d catch up on something from my watchlist on Hulu.  I had the munchies for some reason and wanted to eat a few chips.  I rarely buy those, but heh there was a special at Kroger, so I had some of my fave bbq chips.  I faintly recall bending over to get them out of the pantry while simultaneously pressing my trusty button…and I have no clue what I gave.  After I realized what I’d done and was in the middle of trying to treat myself for the hypo (about 20 minutes later) I looked on my pump to see how big a dose I’d given.  SEVEN UNITS!!  What?!  WHY on earth did I do that?!?!  I don’t even know other than it is such a habit for me now!!  Especially after that last episode doing this kind of thing?!?!  WHY!?!?  I could have just strangled myself, really.  SO angry!!  And scared.  Not a good combination when you’re trying to raise a low blood sugar.

If any of you Ds out there have had this sort of issue, how did you STOP yourself from going auto-pilot with your pump dosing?  I am thinking of putting some tape or some sort of fuzzy sticker on the button so I’ll stop and think about what I’m doing.  Maybe I should just put the whole pump in a ziplock or some sort of case so that I have to take it out to use it?  Have you tried any tactics like that to retrain yourself to test first or at least THINK before you dose??  PLEASE don’t tell me I’m the only one who does this?!?!

woman

Tommy commanded (yes, he did!) me to go pick up a glucagon.  I haven’t yet, but we will probably do that tomorrow.  I’m getting ready to call the endo’s office right now for a prescription AND to find out if they can help with another insurance-related problem that is making me furious.  Maybe I’ll share about that once I ever get any hint that there’s a solution.  SIGH

Happy (& SAFE) weekend to you all!   Happy Mother’s Day to all you moms.

Blessings!

G~


frankly Friday: how do you feel about “a cure”


Okay folks, once again, Friday is for us PWD’s (that’s People With Diabetes) but as always, I hope you will all enjoy the post and it will get you thinking about things maybe for the first time!

I just read this article that initially sounded like yet another “we’re closer to a cure for diabetes” thing, but when you got into it, I found that it’s about getting closer to a way to detect future development of T1D and then possibly a way to prevent it from ever developing.

You can read the article here:  Type 1 Diabetes Breakthrough: Scientists Identify Key Molecule Targeted By Immune System

See what I mean?  The title is like “DIABETES BREAKTHROUGH!” and you’re all like “WOW!  YAY!  YIPEE!”  then it just tells you they’ve discovered a fifth molecule that is attacked by the immune system during the development of type 1 diabetes.

depressing letdown  Yeah.  I mean, that’s great news and obviously it’s progress, but for me, it is definitely a little anticlimactic!

How does it make you feel when you hear news about a possible cure for diabetes?  I’m not talking about the okra-water cures that are constants on Facebook.  I mean the news reports from legitimate sources researching a cure.  What goes through your mind?  Whether you are a diabetic or not, I’m interested in how that makes you feel.

For me it’s a mix of emotions.  I’m usually like, “Yay.  Thank God those coming behind me might be spared living with this nasty disease.”  I never feel hopeful of a cure for me.  If you ever look at the clinical testing sites, they want people who were diagnosed t1d within the last year or two, or maybe sometimes you’ll find a study looking for people who have had t1d for as much as ten years, but forget being eligible if you have had it over 20 years.  I know this isn’t the case, but to me it feels like they’re saying, “Oh man, you’re practically dead from it already.  Sorry, we can’t help you.”  Pshhh!  Sorry… did I shock you with my killer negativity?  Yeah, I apologize.  It sneaks out sometimes.  grin

Personally, I don't think us diabetics 'get used to' injections or finger pricks. I think we simply accept that it's necessary to survive.

 

So how do you feel when you see things like that?  Are you “new” enough to have hope that a cure will be found in time to benefit your life?

If I’m totally honest, my conspiracy-theory self thinks there is already a cure, but it is being suppressed because just think of all the money that would be lost if we didn’t have to pay out big bucks to live??  See?  I have this completely pessimistic side and she comes roaring out when it comes to stuff like this.

ANYhow… it IS encouraging that they are learning new things about how diabetes occurs and which genes might be responsible for the misfire that causes our immune systems to attack themselves.  Really, guys, it is.  I just can’t get too excited because progress is so slow and it’s really already too late for “a cure” to save me.

the workings of the t1d brain

Heh.. I was telling some friends last night that I’ve had diabetes for so long, I don’t know any other way to live.  If I got cured right now, I wouldn’t know what to do with myself.  How do you go from spending every waking moment calculating and figuring out food values and dosages for everything that crosses over your teeth and trying to decide how this or that activity will affect your fickle disease to … well, to NOT worrying about those things constantly?  Ha ha… I guess it’d probably be a lot easier than I imagine, but wow… it’s just not something I can really fathom.

diabetes doesn't define me, it just helps explain meI’m gonna close now, but something has been on my mind that I want to share… a couple of weeks ago, I was talking to a friend while waiting for a low to pass so I could drive home.  (fyi: don’t drive when your sugar is low, ‘kay?)  I was explaining something or other about dealing with diabetes when she said, “I thought your pump took care of that.”  I’m pretty sure I contained my dumbfoundment enough that I didn’t bump my chin on the floor, but I was really stunned that she didn’t understand any better than that.

minion: the look you get when explaining diabetes to peopleI guess I just assumed she’d been around me enough to realize, but I guess that’s not the case.  Or maybe I had never really discussed the finer points with her specifically?  I dunno and really, maybe I shouldn’t have been so shocked, but I guess it really floored me that she thought my insulin pump was essentially like a cure.  That as long as I was on the pump, I didn’t have to worry about the disease anymore.

WOW!  People of the world!  AN INSULIN PUMP IS NOOOOT A CURE!!   It is merely another tool in the arsenal that helps us manage life!  I guess I should admit here that I HAVE used the term “external pancreas” to describe the pump to people before.  Now I’m rethinking that!!  I can’t assume that people understand that while a pump is MUCH MORE like that than treating with MDI (multiple daily injections) for most of us, but we STILL have to calculate everything, still have to manage the unexpected, unexplainable lows and highs that can happen.  We still have to deal with going into DKA (diabetic ketoacidosis) if the cannula kinks or we put the port into an area with scar tissue that won’t properly absorb the insulin, or we sweat too much and the adhesive comes loose and the cannula pulls out or… I could go on with a list of possible things that could go wrong, but you get the picture, right?

That’s part of the reason I am writing more about diabetes here than I ever have before.  I believe this wholeheartedly:

I may have diabetes, but diabetes does NOT have me!

I have diabetes.  That’s me, I am a PWD, a Person With Diabetes, but diabetes, no matter how hard it may try, does NOT have me!  It doesn’t define me.  It makes me strong, makes me tough, makes me determined but it will not defeat me.  I may die from the blasted monster, but it will never control me.  I want to live my life to the fullest, be all I can be, yadda yadda… and diabetes may slow me down, it may make me do things a little differently, a little more cautiously, but it won’t keep me from doing what I want.  It may put me in The Pit (depression) for periods of time, it may make me more susceptible to The Pit, but it won’t keep me there.  Never.

ahem   Soooo…. how DO you feel about this??  Please share.  I’d love to hear your thoughts!  Let’s encourage each other, lift each other up, whether you are a PWD or not, if you know me, you have a vested interest in learning about diabetes, you have reason to be concerned about possible cures and other diabetes news.  Chances are, someone you know in your own life (if we aren’t friend IRL (in real life) that has diabetes.  It’s like a plague these days and we don’t understand it well enough to know why!  Get involved.  You don’t have to go join the ADA or JDF, but learn all you can.  Be knowledgeable.  What you learn could one day save my or another PWD’s life, after all!

Please share this post and share your thoughts here!!  THANKS!

mwah!

Blessings,

G~

Acknowledgement:  All images in this post courtesy of Type 1 Diabetes Community FB group