Tag: person with diabetes


frankly friday: more info = more control in T1D


hypo-unawareness is like walking blind toward a cliff-CGM lets me focus on the scenery instead

Happy Friday, folks!  I’m getting a late start, but that’s been my norm the past few weeks.  I won’t bore you with how flippin’ tired I have been and how much I’ve been sleeping, but trust me.  It’s A LOT and I’m getting really…*heh*… tired of it.  *psh!*

In other news… I just read this article about a study to see if more information (ie: blood sugar testing ..I assume via CGM) can improve the life and health of PWDs.  My first thought?

DUH!?!!!

As you probably recall from previous posts, we purchased out of pocket (we’re still paying for it, actually) a CGM transmitter for me early last year in the hopes that our then-insurance company would soon cover them so I could get sensors to use the CGM.

That was a dream.  It never happened, so when the four sensors that came with the transmitter were done, I had to put the thing in the cabinet and there it sits.  Pretty sick feeling to send a payment for something you paid over 5k for and only got to use a month.  Ugh!

So I’m looking forward to getting the CGM, in case you didn’t realize.  *ha ha*  I know they’re not perfect, but people, when you are walking around, helping move heavy furniture, thinking you’re fine as frog hair only to test because your honey thinks “You look kinda pale, hun.. why don’t you test?” and find that your sugar is 27??  That is NOT a good feeling!  It’s terrifying to know that you can’t tell when your sugar is dropping.  To clarify for you non-Ds, a low is more of an emergency situation most of the time.  You can drop so low, or so quickly…or BOTH that you COULD DIE from it!!

Did you catch that?  I could DIE because I am unable to tell when my sugar is falling.  My body no longer sends me signals to warn me that I need to eat something or suspend my pump and chug a can of Coke or scream for Tommy to come and help me until I begin to feel that being-pulled-out-of-myself feeling that I can only imagine means I’m about to pass out.  It FEELS like I’m about to die.  Seriously.  I detest that feeling.  It’s terrifying and I’m looking forward to not dealing with that, not having to worry when I’m by myself somewhere or when I’m driving.

Is more information important for people with type one diabetes?  You bet your bottom dollar it is!!  Why do we need a study to prove that?  I guess because insurance companies are still denying CGMs to people who have documented hypo-unawareness and doctors’ letters saying their patients need them.  Because people out there still don’t understand how T1D affects us or how serious it is.  (remember me telling you my friend thought because I had a pump, that “took care of everything” and I really didn’t have to “do” anything regarding diabetes??!!)

hypo-unawareness is like walking blind toward a cliff...CGM allows me to focus on the scenery instead

So yeah, information is crucial.  Knowing what our bodies are doing with the replacement hormone we inject ourselves with daily in order to live is kinda important.  Knowing whether our blood sugar is too high or too low or just right is vital to our safety,  not to mention the safety of our children or YOU, in the case of driving or operating machinery.  Think about it.  If YOU didn’t know your body was doing something…for instance, if your body didn’t recognize that it was blind or deaf, do you think that might cause a problem?

That’s silly, you say?  The only reason it’s silly is because you can visibly see (or not, as the case may be!) when a blind person needs help or a deaf person needs assistance.  It’s not at all visible with diabetes.  All our dysfunction is on the inside, but it affects the very system that controls our entire metabolism!

*sigh*  I’m thankful for the technology of CGMs.  I’m looking forward to having it and feeling more confident and safe when I’m by myself or with people who may not understand diabetes enough to help me if I needed it.

I’m curious what this study will determine.  I can’t eve imagine it concluding anything other than more info equals more power to control our disease.  At least more ability to keep ahead of it!

What do you think?  If you’re not a PWD, have you or are you learning anything more about T1D from these posts??  Please let me know.  Interaction is like air for me!!  Like the posts or comment!!  I am dying to know what you guys think.

Have a beautiful weekend & a blessed Lord’s Day!

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