Category: frankly friday
So a guy I’ve gotten to know online who is a diabetes advocate (and a t1d himself) recently posted this great video about the whole issue of what to call someone “like me”….a “person with diabetes” or a “diabetic”.
Apparently, there remains a huge debate over this and some folks are really touchy about which one you choose to use.
Here’s the video I submitted as requested by my buddy in response to his video : (btw–I’m planning to join the discussion if possible!)
I sorta-kinda used to be offended about being referred to as a “diabetic” back when I was first made aware of the idea. I fell for the whole “don’t limit me with a label” and “you’re saying I’m nothing more than a disease when you say that!” mindset. I say fell for because frankly, it didn’t last long. It’s just not my nature to stay terribly upset by something like that. I just got caught up by an idea that I’d never had before, I think. That and it gets really old using that many words to say something that could be relayed with one word…and I find it awkward to always say “person with diabetes“. Maybe that’s just me.
I really just got tired of being upset about it. I wondered if, in the end, was it really worth my energy and emotional balance to get riled up about that, ya know?
Obviously, I’ve decided that for me, it’s not worth my time. I don’t care if people refer to me as “a diabetic” or as “a person with diabetes“. I try to use the terms interchangeably in my posts because I know there are people out there who really have an issue with it. Since I don’t care one way or another, I try to be balanced with which term I use as a courtesy to my readers.
Here’s the thing…if someone says, “That’s Geannie. She’s a mom.” I’m not going to get all bent out of shape because, obviously, I am more than “just a mom”. But that’s kinda a given, don’t you think? Do YOU know anyone who is a mom or dad and absolutely nothing else?
No! Of course not! I guess I feel like this debate falls a bit too close to the whole “politically correct” atmosphere that seems to be epidemic everywhere in the US today. My feelings are not that easily hurt most of the time.
I have come to really dislike hearing the fairly uncommon phrase
“bad diabetic”, however. Not that I go on a rant anytime someone says that. I realize that it’s not meant as a personal insult or even a general one. I figure that it’s just how some people speak, it’s how they were raised to talk about someone with a chronic disease.
But that got me to thinking that there’s really NOT another disease out there that is ever put into words like that. I mean, you don’t say of someone “He’s a bad hemophiliac” or “she’s a bad pianist” ya know? Nobody does that. No one says “they are a bad cancer patient” when someone has had cancer for a long time. I know that’s what at least one of my friends means when she introduces me to people that way (not EVERY time, but often enough to make me wince — ha ha!) She just means, I think, that I have struggled with diabetes for a long time and it causes me various problems.
Honestly, I’ve never ever stopped someone or called them out for using that phrase. Maybe one day I will, but probably not. Anyone who has said that is either a family member or a friend. People just don’t understand and I can extend them some grace for that.
People really DON’T understand diabetes at all unless they live with it or with someone who has it. You can’t totally understand it otherwise. But I sometimes assume people who know me know more about it than they do.
I have some friends who I love dearly, but we’re not super-close as in we don’t get together often or just chat/text on the phone regularly. One friend, after being around when I had a hypo that kept me from driving home was sitting with me while I treated and she says, “I thought your pump took care of that.”
Yeah, I was stunned for a second. I just didn’t realize anyone did, would or could think that a pump was essentially a cure. It blew me away. I quickly tried to expand her knowledge as best I could. But I’m still not sure she really understood.
You see…people just don’t understand. I always try to inform people as much as I can (when they show interest) about what diabetes is really like, what is means to live with it 24/7/365. But not everyone can really grasp it all.
Like my one friend who will still refer to me as “a
bad diabetic“. Bless her heart. Even though I’ve posted various statuses about that or even mentioned something like that there really IS no bad/good kind of diabetes, she still doesn’t seem to understand. And that’s okay. It’s not on me to make sure she does. We don’t see each other very often, so it’s not like there’s time or even a need to more fully educate her and make certain she is understanding.
And after all, it’s not like she’s calling me a “bad friend/wife/mother/singer/bungee jumper”… ya know? There are a lot worse things to be called. Ha ha!
But if you would like to understand more about how it is to live day in and day out with diabetes, ask me! Ask me!! I would much rather someone ask questions than make assumptions any day!
I know guys, I KNOW! I have really been awful about keeping up with FF posting, but it seems the past couple of weeks have just been so stinkin’ busy! I promise I’ll try to do better. I know the three of you depend on me for this.
Anyhow, okay, so I’ve got some diabetical stuff that is just irking the snot right outta me lately.
#1 – Dexcom alarms: Okay, I REALIZE that’s what the thing is for. To alert us before our blood sugar gets completely out of control, but c’mon! Am I the only one who gets SO sick of these things? It’s not so much the “urgent low” or “high blood sugar” alerts as much as like, when you’ve treated your hypo, it continues to BEEP, BEEP, BEEP at you and you’re all like, “I KNOW it’s low! Didn’t you see me drinking that juice just five minutes ago?” Of course, I know Dex didn’t see me, but sheesh! Then, of course, there are the alarms that you are rising too fast. Or when your sugar’s been too high and you corrected… okay, maybe you even rage-bolused and now it’s hollerin’, “Comin’ in hot! You’re gonna crash, you’re gonna crash! Pull up!” That’s my interpretation of the dropping fast alarms. It’s like, “DUDE! I’m at 330! It’s okay with me if it drops fast right now, mm-kay? Now, knock it off!” I know it’s a lot to ask, but there’s gotta be some way to program the receiver so that it knows when you are too high and it’s okay if you’re dropping fast, or that your last readings were too low and you need to be going up quick. Is that really too much to ask? 😉
Peeve #2- keeping your CGM stuck to your body: I know, I KNOW! EVERYBODY has this problem. I just hate it though. I mean, you know that Dexcom knows good and well that most of us will keep our sensor in as long as possible. They HAVE to know it. (and so help me, if they start doing something else to make it so that we have to go through this stuff even quicker, I’ll scream bloody murder!) And I know there are companies who are working to remedy the problem of long-term stick-on-ness, but GAH! I mean, I love my GrifGrips, but after about a week, they start fraying on the edges and looking pretty sad. I got some of the SkinTac liquid and yeah, it helps, but I need to apply it when I first put the thing on me and not try to use it to re-stick the edges after a week or two. It doesn’t work nearly as well like that. That stuff is STICK-EE! I will be interested to see how much improvement I get from applying first instead of waiting til there are problems. I also understand people with skin issues who have a hard time finding ANY adhesive material that doesn’t break them out. Thank God, I haven’t had any trouble with the adhesive that comes on the sensor or the pump port, but I have had some issues, slight issues, but worrisome still with other adhesives. I’ve used the Grifs about 5 or 6 times now and only had one time that it bothered me so much I had to take it off. That was when I had it on a pump site on my stomach. It was fine for two days and then started itching slightly. I didn’t get concerned about it then, but by the end of day 3, it was itching pretty bad, but still with periods of not itching. By mid-day 4, I had to take the thing off. (yes, I keep my pump sites til the pump reads “NO DELIVERY”, so yeah, Day 4 which was going to be time to change out anyway) I had the perfect outline of my cute little camo heart in red, angry skin. It stayed like that for about 3 days, too. Very worrisome, but I haven’t had problems with it on my arms. Thank God for that! So yeah, the whole how-do-I-keep-this-thing-stuck-to-me struggle…if someone could fix that, that’d be great.
And the last thing on my list of peeves (for today) is….
Peeve #3-When your tubing gets hung on stuff. I know you Omni
Pod people don’t have to worry about that, but let’s not start all that “I don’t have a tube” nonsense right now, okay? This is about me and what irks ME. Ha ha ha… I have been with Medtronic since 2004 when I got my first pump and honestly, they’ve been great when I’ve had problems and I have just not reconciled the risk of knocking the pod off and losing
all the insulin in it to the freedom of not dealing with the tubing. Anyhow, so since I’m not ready to try the Pod, I’m still dealing with tubing issues. They don’t happen all the time, but when they do, ARGH!!
Okay, so that’s my diabetes-related Friday post, kiddies. I know. Not much to write home about, but doncha dig my memes? Ha ha!
Tell me what YOUR biggest peeves are!
To be perfectly honest, this is not something I’ve ever thought about. Both because back in the olden days when I was in school (shut up) we never had lockdowns or any such emergency situations as are almost common today. We didn’t have protocols for how to take care of chronically ill children. We basically just did the best we could with what we could get a school to conform with for our individual need.
I know. Scary, right?
But a few days ago, I ran across an article posted by my young mom friend who’s daughter was recently diagnosed with t1d. She’d posted it on Facebook with this comment tagged to her husband…“One more thing we have to worry about now.”
That broke my heart thinking about how stressful it has to be having a child with type 1. The article was about the problems that can occur for a type 1 child when all their diabetes supplies are kept in a nurse’s office if there is a lockdown of the school.
This literally never crossed my mind since I homeschooled my sons. But to think of it in terms of diabetes care… oh my! It’s terrifying!
How have you dealt with this type of issue? Have you needed to make adjustments for you or your child because of a lockdown?
(I also found this cool list of things “teachers” should know, but I think EVERYONE needs to know this stuff! 😉 )
Hello all you happy people. I’ve got another diabetes issue clanking around my brain lately. First, let me explain about that funny word in the title…
GLUCAGON- n. (gloo-KA-gon) Glucagon is a naturally occurring hormone. It raises blood glucose whenever it falls too low. …in a REGULAR person, that is. For us diabetics, we may or may not still secrete some glucagon naturally. The thing is, if we’ve over-dosed our insulin or had more exercise or stress or missed a meal… we could end up with LOTS more insulin in our bodies than would ever happen normally in a non-diabetic. So, if that happens, and we still secrete a little glucagon ourselves, it will still not be enough to prevent hypoglycemia. We will still go severely low and may lose consciousness or even die. (here is an even better explanation!)
Low blood sugar is SERIOUS! That’s why you always see a type 1 with tons of snacks or other means of raising blood sugar if necessary.
RABBIT TRAIL: While I’m on this topic, let me just say that it is tough having to treat a medical condition, a potentially deadly medical condition, with food. Countless type 1’s have been heckled, bullied, scorned, gossiped about…you name it, over this self-preservation method we MUST use.
Let me explain…let’s say for instance, you are in a roomful of high school students, taking a test perhaps, and you begin to feel your sugar dropping. The rule of this class, from this teacher, is no candy in class. The fastest way to counter the impending hypo is to quickly chew up a couple peppermints or glucose tabs or Lifesavers (my fave). The teacher is aware of your condition (because you informed them, like a good diabetic) but the kids sitting around you may not. Even if they do, because they don’t know anything about diabetes, they think you are faking, milking it or worse, doing it for spite. Then there are those times (BTDT too many times!) when you have a substitute OR even a regular teacher who doesn’t understand diabetes and is completely uncooperative or gives you a hard time about treating hypos in or during class. (remind me to tell you about the middle school teacher I had who had flunked out of med school & insisted on making a major production every time I went low in his class!! GAH!!)
Then there are those wonderful times when, as an adult…maybe a parent, even, when you have to treat in front of children. That’s always lovely. Here… these photos will give you the gist of what I mean:
(thanks, Jimmy Kimmel, for these perfect examples of how kids respond when they think you’re hogging all the candy)
Then you have co-workers and such who will respond this way:
Yeah, no matter how many times you explain, no matter how much info you give them, they STILL don’t get why you have to stop and EAT FOOD and you call it “treatment” or say it’s because you are sick.
That’s the big problem…people don’t see food as “medicine”, they don’t relate food intake with how the body functions. They don’t get that as type 1 diabetics, we must MANUALLY balance food intake with energy expenditures and insulin dosages. EVERY DAY. ALL DAY. And even while we sleep. They don’t get that if we have too much insulin (or perhaps overexert or expend too much energy for the nutrients in our bodies) or if we don’t inject insulin according to our food intake, or if we experience an illness (like a cold, people. A COLD can derail our diabetes!) or excess stress, it can cause all sorts of problems for us simply because we do NOT have a functioning pancreas to do all that thinking for us like everyone else.
deep breath Sorry…thought I needed to throw that stuff in there. Heh.
Okay, so back to the glucagon question. You see, like EVERYTHING ELSE with diabetes, (and most any other illness or disease these days!) medication and supplies are NOT cheap. With diabetes, there’s a never-ending list of supplies that we need and most of those need to be kept with us, on our person, all the time. Especially when travelling or any sort of activity where we are away from home.
The point to all this is…when trying to decide what to spend our family’s limited funds on, medically speaking, I sometimes have to choose what is absolutely vital over what is not-so-absolutely vital. Yeah…stinky choices, I know. So when I have to pick, I must choose my insulin (because without that, I will die) and all the instruments I need to administer the insulin (reservoirs, tubing sets, batteries, alcohol swabs, syringes in case the pump fails) and also testing supplies so I know how to dose the insulin (test strips, lancets, sensors, transmitters and batteries). Other than those, I also need adequate food supply and foods that can be carried easily, so certain types of snacks and candy and/or glucose tabs or gels. When figuring all this up, most often, spending another $50 on a glucagon kit, which always has a short shelf-life and will likely expire before I need it (which means it must be thrown away) becomes an easy “no” and usually a very distant after-thought.
Fifty bucks might not be a lot to you, but to us, it’s a small fortune. I have a REALLY hard time laying out $50 that most often has to be thrown away in a few short months.
However, when you are sitting on a highway in another state with no exits in sight and no way to get off the road (because you’re with the Hubby in his work truck pulling a trailer) and you are popping Lifesavers in your mouth, chewing as fast as you can, drinking a can of Coke and trying to fend off a very aggressive low that feels like it’s threatening to put you under…you begin to feel really stupid about not spending that $50 bucks. That is, you feel stupid in between your life flashing before your eyes, wondering if you told your kids you loved them enough or hugged your mom the last time you saw her or if your best friends know how much you love them.
I’m not exaggerating. That’s how it feels when you are close to passing out while your blood sugar is plummeting. It’s horrible and you do NOT want to experience it.
So what’s a poor diabetic supposed to do?
I honestly don’t know right now. I mean, if it was just a matter of scrounging up the extra money so I’d have the thing, it wouldn’t be a big deal. But when it expires so quickly and it’s not every day/week/month or even year that you even need a kit?? It’s hard to know what to do.
However, it’s those times that you never suspect, the times you could never “plan” for, those times when you ~thought~ you planned everything very, very well–when you ate properly, counted all the carbs, dosed exactly as prescribed but STILL everything goes wrong….those are the times you keep a kit for.
How do YOU deal with this? I have been reading and chatting with folks in the DOC about this and some have great insurance so keeping a good kit isn’t an issue, others speak of never being without several for their children (which would TOTALLY different! it’s much easier to risk my own life…I’d never be without a kit for one of my children!) So how do YOU handle this issue? What do you think should or could be done?? I know making the kits more affordable would be an awesome first step for me. Even half that price would be helpful. I don’t understand why insurance doesn’t cover them more than they do since having one of these kits can help me avoid a trip to the ER or worse.
Before we discuss, let me drop this info on you…I know many people, even in my own family, who would shudder at the thought of having to mix a medication and give me an injection in an emergency. I understand. Opening a glucagon kit when someone you love is passed out can be intensely scary! People panic, especially since it has to be mixed, not just drawn out like insulin. Maybe I’m just way out of the loop on this, but Eli Lilly has an app to show people how to use glucagon! I’m not sure how this would work, especially if you use a password on your phone (and I think most people do these days!) but there IS an app!! Look:
Okay, so let’s dish…what is your stance on the glucagon issue? Is it hard for you to afford and/or justify purchasing it for yourself? How do you handle it?
Inquiring minds want to know…
I’ve been thinking a lot lately about the whole “cure for diabetes” thing.
There are really two lines of thought on this for me. There’s the thing where everyone and their brother tells you about some wacky “cure” — everything from cinnamon to okra water and lots of stuff in between. Those just irk me most of the time.
After over 40 years of living with T1D, I’ve had TONS of so-called “cures” offered to me and extolled to me by very impassioned and well-meaning folks.
Most of the time I just smile and let it go. Yes, it drives me nuts that people, especially those close to me, don’t get that there’s a difference, a HUGE difference between type 1 and type 2 diabetes…that type 1 is NOT caused by lifestyle or diet or weight nor can it be reversed or, as yet, cured. They don’t get that type 1 means “insulin deficient” and type 2 means “insulin resistant”. They don’t get that while, yes, sometimes people they’ve known with type 2, when it IS caused by lifestyle, can be reversed while other times for other reasons, it cannot.
They don’t get that diabetes is different than “hypoglycemia” or even that “hypo” isn’t actually a disease but rather a symptom, a passing event that diabetics can have and also non-diabetics can experience if they don’t eat correctly.
I usually let those go unless I see that kind of stuff being pushed on someone who is newly diagnosed or is a care-giver of a type 1. They don’t always know any better so I normally will either step in while the concerned person is explaining their chosen “cure” or I’ll talk to the other person privately and explain that none of that is remotely true.
Okay, then there is the actual, legitimately possible cures that are in the works. For YEARS I have heard “there will be a cure for diabetes in 5 to 10 years” and yet, here I am, at the beginning of my 5th decade of living with type 1 with no evidence of this cure.
However…there are some promising improvements to diabetes treatment in the pipelines. While they are still not “cures”, per se, they are definite steps in the right direction.
While I have an insulin pump, a device that helps me avoid multiple injections each day AND provides an adjustable baseline delivery of insulin (basal rate) throughout the day and night, there are some new devices on the horizon being referred to as artificial, or bionic pancreases.
Genesis, from Pancreum
is the latest one I’ve read about. There is also this one, the iLet from BetaBionic, that I’ve been reading and hearing about the longest.
This one was, the best I know, the beginning of the idea of putting both insulin and glucagon (essentially, the opposite of insulin) into one device to go beyond what an insulin pump can do in closely controlling blood glucose levels in type 1 diabetics. The idea was born in the mind of a dad, Ed Damiano, who wanted better for his type 1 son, David, who was diagnosed at 11 months when the idea that one day, David would go off to college and not have him or David’s mother there to watch over him. I guess that would be every D-parent’s nightmare, right? So Ed began to work on this idea of a better way to regulate blood sugars. And now, after many years and much effort, the iLet “bionic pancreas” has moved into clinical trials.
That is BEYOND exciting to me! I mean, yes, it’s NOT a cure, but it would be SO MUCH CLOSER to being able to live a “normal” life for most type 1 diabetics.
If you watch the video linked to Ed’s name up there, you’ll get a bit better understanding of why, since we now have these great insulin pumps and CGMs, we need this new technology to work. No matter HOW long you live with T1D, there will come a time when something goes wrong. A set is defective or gets pulled out in your sleep and your sugar goes too high or you forget to bolus, under-bolus or your insulin is bad and you end up hypo or possibly high again. There is ALWAYS some uncontrollable factor that can really jack you up as a T1. Stress, unexpected travel, an emergency, sickness, an overtime shift at work, the baby gets colic and won’t sleep, you fight with your spouse… seriously, pretty much ANYthing can affect our blood sugar, so simply having a device that delivers insulin isn’t the best possible answer. The advent of CGM availability was a BIG step forward, but still, not enough to remove enough ability of variables to mess up one’s levels. I’m sure a bionic pancreas won’t be the end-all-be-all we all dream about, but I’m hoping it will be another huge step forward and I’m praying that I might be one of the lucky ones who will benefit from it eventually.
In the meantime, c’mon, Cure… we’re still waiting for you!! Enough of this already!
For you guys either not yet hooked up with the DOC or with no “need” of it, the DOC stand for Diabetic Online Community.
I didn’t know such a thing existed for a long time.
Growing up with diabetes, I never had a support group or a peer group of any sort. My parents didn’t “do” diabetes conferences or fairs. They sent me to a diabetes camp the first summer I was diagnosed and I was so flippin’ homesick, I couldn’t have learned anything anyway. I heard a year or two later that this particular camp had not been well managed that year. That might explain why the counselors could be easily observed from our cabins after lights-out piled up on a picnic table smoking and drinking. Yeah, prolly.
So other than meeting a new friend named Erin that I know absolutely nothing else about (so I can’t find her now) and doing a really fun obstacle course one day, all I got from that experience was a severe resistance to ever attending any other such thing. Ever.
I know there are great diabetes camps today, but I think the biggest problem with sending me was that I didn’t know enough about the disease, I was newly diagnosed and I was severely homesick even when staying at a friend’s 20 minutes from my house. When they drove me 4 hours away to this camp, I was just miserable and cried a lot. Not really a great learning environment.
Then like I said, my parents weren’t really “diabetes” parents. By the time I had been diagnosed a year, my little sister had been diagnosed with epilepsy, so they kinda had their plates full. Mostly my poor mom, who dealt the most with all our medical stuff and doctors and calls from school because no one knew how to care for us. After I became a mom myself, I looked back in amazement that my little mama survived those years! I know she had to pick me up from school at least once almost every week. It must have been maddening for her. When my sister reached those hormonal pre-teen years, she began to have a lot more problems with seizures and so hopefully, I was more able to tend to diabetes myself by then.
[Diabetes Hands Foundation is an amazing resource for diabetes information! They were the main sponsors or creators of MasterLab that I attended in Orlando a couple weeks ago!]
Anyway, as you can see, my home wasn’t solely focused on my disease and honestly, my parents actually felt the diabetes was much less serious than my sister’s epilepsy. I overheard my dad once telling someone that since they knew what was wrong with me (a non-functioning pancreas, is what I assume he meant) but they didn’t know what caused my sis to have seizures, dealing with her medical stuff was harder. The general sense of what he said, as I recall it now, hearing it as a child, was that they didn’t have to worry much about me. There were treatments and ways to manage diabetes. And while that’s really true for the most part, it set up a really tense dynamic in our home where I was expected to do more, take care of more, be more responsible, and most of the time even be responsible for what she did as well as for myself.
[I was often given the idea (or told outright) that I was lazy so now, I sorta AM pretty lazy about a lot of things. The more tired I am, the less I care about getting other things done. Is this a result from childhood or more an actual tendency? I dunno..]
That’s a whole ‘nother story that doesn’t have anything (sorta) to do with this post, but let’s just say that diabetes was “my thing” so much so that once when I had my first extreme low when I was a sophomore in high school, my mother didn’t know how to use my AccuCheck meter and couldn’t test my sugar. She had no clue I was low and I wasn’t able to speak…words would form in my head, but never came out my mouth the same way, so I couldn’t communicate and she thought I was “putting on”, so I got bawled out during the whole episode. I would be chewed out at the endo appointments by them because my A1c wasn’t acceptable, then scolded by my mom on the way home for not keeping better logs. I DESPISED going to the endo!
[this is a hashtag used to help let the world know what it’s really like to live with diabetes]
We didn’t really change how we ate at home. The most glaring change I recall from diagnosis was that my usual morning meal of cheerios with about 2 tablespoons of sugar and milk with Nestle Quik was taken away. I don’t know what it was replaced with…I seriously can’t recall, but I do remember how much I loved that sweet grit that would be left in the bottom of the bowl and how much I enjoyed trying to scoop it all out with my spoon before turning up the bowl to drain it. I still love it even though we seldom have cereal in the house today, IF WE DO, and IF I GO LOW, that is what I’ll fix myself. The cow’s milk is replaced with almond milk today since dairy makes me so sick and it probably won’t be Cheerios, but I’ll still load it up with a couple heaping spoons of sugar and smile while I scoop that gritty sweetness out of the milk once the cereal’s gone. I know, gross, right? Ha ha! Too bad. I can’t help it. I still love it.
[Glu is a great DOC you should check out. Google them!]
Don’t think my mom was really negligent and didn’t feed us properly, the sugary Cheerios was my own doing. And honestly, I’m pretty sure I snuck the extra sugar into the bowl when Mom wasn’t looking. She just didn’t really try to change the whole family’s diet, which I guess was fair, but it sure didn’t feel fair when it came time for things like Halloween and Christmas and I got handed some nasty sugar-free crapola while my sister got the good stuff, ya know? Sometime I’ll hafta tell you about when I was maybe 9 or 10 and my aunt who, after offering my sister a bowl of M&M’s, looked at me and said, “You can’t have any because of your sugar,” and felt that took care of things. Sheesh!!
[BeyondType1 now has their own app, which I have been burning up lately! It lets you post your “D-identity” (whether you’re a diabetic or mom, sibling, etc of a PWD) and where you live so you can find Ds close to you!]
Any “new” thing or technology that we were offered or told about was pretty much handed to me to figure out, which lead to even more things that neither of them knew how to use or read or utilize to help me. Diabetes was solely and completely MINE. Diet-wise, control- or log-wise, whatever…it was mine and I wonder now how in the world I stayed out of the hospital as a kid!
[Did you know we have our own day? Actually, November has been deemed “Diabetes Awareness Month”…not that I’m super-impressed with that. So far it hasn’t really helped tremendously to get proper information to the masses, but there’s always hope, right?]
The only other time I was in the hospital after my initial diagnosis was when I was a junior in high school. We switched to a new endocrinologist who felt I really needed to be admitted for a few days. Looking back, I see this was his way of trying to teach me how to manage things better. It wasn’t that I was horribly ill or in DKA, it was more an attempt to help me understand the disease and how to manage it. The doc and the hospital were in Lexington, which is about 100 miles from home, so I was left there and didn’t see my family except for maybe once until they released me about a week later. However, my new boyfriend did come to see me a couple times. big smile Bless his heart, even that stuff didn’t scare him off because he still married me about a year and a half later.
[I always wish I had something like this to hand to people who say, “Oh, I don’t know how you do that! I could never give myself a shot!” Gag! If your only other alternative was death, I guarantee you could! rolls eyes]
Okay so back to how much I’ve come to love the DOC! There are SO many ways to connect these days. Like I said, it was awhile after I got online back in the day when having home internet was a new thing, before I ever realized there was any such thing as a community of other diabetics!
Once I found these mythical people, I was amazed to read about how people communicated and how they spoke of the things that had always been “weird” in my world, but were common in the world of the DOC. Other people got those hard, sensitive, bulky areas from years of pork and beef insulins. Other people had dealt with atrophy from those, too. I’d never EVER met anyone who had a clue what that stuff was! I soon learned I wasn’t a bad person for only changing my lancets when they started to hurt my fingers. I wasn’t a ‘bad diabetic’ just because I had been labeled “brittle” by the endos and other people dealt with being “brittle” as well. It was pretty amazing to find out I wasn’t alone. Even though I KNEW I wasn’t, when you don’t have contact, it still seems as though you are and for all practical purposes, you really ARE alone when no one in your sphere understands you as well as another PWD.
[The DOC spans all media and areas of the net these days. There are tons of apps from offering support to helping keep better records to calculating carb ratios! Do some research and you’ll soon have plenty to keep you busy!]
So really, these days? There’s no reason to feel alone in dealing with diabetes. The DOC has expanded and become invaluable to most all of us PWDs. I’ve only ever seen one person say connecting with other Ds hasn’t helped them. I agree that it makes me focus more on diabetes, but that’s never been a bad thing. The most important aspect of dealing with diabetes or any other chronic disease (or just LIFE, for that matter!) is having a positive attitude and knowing there’s always hope.
[Don’t get all offended! I think this is kinda funny. I’m pretty sure this comes from Anthony’s group called “Duck Fiabetes”. You might as well, laugh, right? You can Google this one, too.]
If you lose that, you’ve kinda lost the battle anyhow, which is why we need each other! What’s YOUR experience with the DOC been like? How did you find it and how long have you been a part of it? What do you feel it’s done for you and your management of diabetes? Do you have suggestions to improve the DOC?? What other diabetes blogs do you read?
Let’s talk! Diabetes support doesn’t have to (nor should it!) only come from other diabetics. That’s what I try to do here…educate everyone about living with diabetes! The more we understand, the better off we will ALL be!
I just want to quickly tell you guys that #masterlab was * singsong * AWESOME!! I had an amazing time listening to and with some incredible people!
I’ll share with you about my first-time-ever-flying experience in another post shortly, but let me just focus on #masterlab2016 for a moment here…
First of all, thank you SO MUCH to #diabeteshandsfoundation, #diabetesadvocates, and all the sponsors of this shindig! I guess it’s because I’m just a small-town gal who’s been a big homebody all her life, but I was really impressed with the facility chosen and the meals provided, the speakers, the effort to stream via #periscope for those who couldn’t attend, the materials provided… it was just all really superb! (I’m told edited (ie: fancied up) versions of the sessions will be available in a couple weeks, so I’ll link them in another post for you then!) Excellent job to all those who worked so hard and gave funds to support this effort!
I posted before about how this whole recognizing-myself-as-an-advocate thing is new to me. Boy, #masterlab was just what I needed to clarify and put perspective on things. I’ve also mentioned before I think, that growing up, I didn’t have support groups or #FFL or any sort of support or resource for just not feeling so alone. It was amazing when I finally found the #doc and then to sit in a room full of other diabetics, knowing every other person in that room would know what I meant if I said, “I’m feeling high.” or “That last ragebolus is gonna be the death of me.” or “I have to pee AGAIN…darn croissant!” That’s gold, people. Just knowing that someone sitting right beside you can understand what you’re going through…just an amazing feeling I hadn’t ever had before.
That alone was reason enough to attend. But then there were the speakers.
I enjoyed them all, but must say that probably Scott Johnson and his line about letting our advocacy goals “catch fire” and encouraging us to follow our passions to create great advocacy missions was great, along with Roneice Weaver with her spunk, her drive and her indomitable spirit to serve others.
I loved how she encouraged us to dream big. How she said, “If you don’t ask for the big stuff, you won’t get it!” which made me think that, yeah, when I think small…“I need my blog to at least pay for itself” when inside I really hope that someday it will generate enough income that I can contribute to helping pay bills around here, pay us out of debt and not have to worry constantly about if we can afford my meds and supplies and docs and labs… Don’t dream small. Dream BIG! This ALL goes back to the level of faith I have as well. Why would I ask small things from the God that created the universe with merely His words?? Yeah…
And then there was Dr. Mark (Heyman), my table-buddy who was sitting beside me the whole day, not giving away that he was gonna rock the close of #masterlab with his amazing “sermon” about caring for ourselves!
I think, via Twitter, we pretty much all agreed that his message, as a type 1 psychologist who counsels diabetics, was the one most of us needed the most. He told us that taking the time, money, etc. to care for ourselves isn’t selfish. That it’s impossible to serve from an empty vessel so we must “tend to” our own needs in order to be the best advocate (or mom, spouse, friend, worker, etc.) we can for those we wish to help. He advised us to give ourselves some slack, some grace for the days when it’s hard (because there WILL ALWAYS be those days SOMEtimes) and to encourage each other and those we help to do the same. No diabetic needs to beat themselves up over a bump in the control road, ya know? It happens. Life’s imperfect. “Fix it” the best you can, seek help if needed (endo, support group, etc.) and go on to the next day, which will eventually be better. Realize that bad days happen. But they don’t have to define us or determine our outlook on life.
Those were probably at the top of my lovin’-list. There were also great talks about the ins-and-outs of clinical trials by Ellyn Getz
who called trial participants “medical heroes”. Then John Griffin and George Huntley talked to us about discrimination and various avenues we can take to stop it.
There was a spontaneous discussion with the attendees when some of them objected (or at least bristled) at using the term “disabled” when referring to diabetes or pwd’s. I loved the way they addressed this by pointing out that there IS a level of what we’ve come to term “disability” because of the mere fact that we must take special precautions that the average person doesn’t have to worry about. That we need breaks to take care of our diabetes and we could become terribly ill or even die when those aren’t given (or taken!) and so forth. The statement (as paraphrased by me) “Diabetes IS a disability in the physical sense of the word, but that does not mean we are ‘disabled’.” I like that!
We also heard from Hope Warshaw and Kurt Anderson about the world of diabetes education and those who are CDEs…
They spoke about the training of CDEs, the importance of getting diabetics in to see CDEs regularly and such.
Also Jay Keese told us about various legalities and legislative issues facing the world of diabetes. Then Mr. Gene Kunde CEO of Diabetes Hands Foundation, closed out the day after introducing each speaker throughout.
My brain was exploding a little, but it was good. I’m headed to my inbox to fill out the survey letting DHF know how we thought the whole event went.My overall summation of MasterLab is that it is an awesome event and much-needed!
I am not sure who is responsible for the scholarship that made it possible for me (and others) to attend, but I am SO grateful!! Without that funding, I absolutely wouldn’t have been able to be there. I hope my advocacy efforts will improve enough so that you all think sending me was worth it!
Didn’t you just know I was gonna talk about the Dex today? Ha! No? Then you’re not paying attention! Bahaha!
So, if you were around here yesterday, you saw that I got my new CGM delivered! How exciting! Then, as I’m opening the boxes, the realization hit that, DANG! I’m gonna hafta read a lot to figure this thing out!
Boo. Honestly, I felt really overwhelmed when I realized this was so different from the Enlite CGM that I’d had for a short time previously. So I called the hubby because, well, I couldn’t figure out how to use the stupid credit-card-looking SD card thingie and he was like, “NO! STOP! Don’t do ANY of that without me!” The man was adamant. And I guess that was a good thing, it took the both of us to figure out the instructions.
Not that they were horrible, but there are a few things that could have been made a bit clearer, like what that tab thing on the sensor inserter was actually for. I guess maybe integrating the instructions would have been a better thing to do. There are apps for the Dex you can get for iPhone (& soon or maybe already? Android too) so I had started one of those, but stopped when it got to the actual insertion of the sensor because I wasn’t there yet and didn’t want to get ahead of myself. I thought the next step in the app was going to be how to set the app up to pair with the transmitter or something. I didn’t realize it was going to be a very helpful video on actually inserting that sensor! SHEESH!
We were sitting there scratching our heads, looking at the printed instructions which don’t even label the parts for you but then mention them in the steps. Argh.
ANYhow, we finally got it in and the transmitter attached (-Which was actually the hardest part of the whole thing for me… I didn’t know it was going to take that much force to make it attach! Totally unlike the Enlite which just snapped on, so it was an adjustment for me!)
Okay, so the next bump we ran into was that the receiver didn’t seem to be working. When I pressed the menu button, it would just do a brief vibration, but no activity on the screen at all, no sound, no nothin’!
At first, I thought maybe it would start working once the transmitter was activated, so we finished up that whole process but still, the receiver seemed defective. According to the instructional video, there should have been a battery icon when we plugged it into the charger, but nope. So we called Dexcom for help and answers. I was trying hard not to get really disappointed so when we got a fella that was a little hard to understand, and he ended up telling me to just let it charge for the 3 hours to see if that was the issue, I wasn’t very happy. It wasn’t that he had a horrible accent, but his voice was extremely soft and he didn’t articulate very well, so on top of his Spanish accent, it was hard for me to get everything he was saying without asking him to repeat. Sheesh. He also had me take a paperclip and poke that mysterious reset button, but nothing happened with that, either.
He said to call back if it wasn’t working after the three hours. So…
I went out to pick beans!
We haven’t spent a lot of time in the garden lately. My sister’s been up here rooting around out there. We had to inform her if she kept pulling the onions by the tops (instead of loosening the dirt around them first…she was just pulling the tops off!) that we would ban her. Ha…and then that it was much more prudent to actually gravel for new potatoes instead of just yanking the whole plant up, taking the few small potatoes dangling from the roots and tossing said plant aside. SIGH Okay, so all that aside, she told me there were beans out there a couple days ago. I thought, “Sheesh, she must be picking tiny, immature beans!” which was fine if that’s what she wanted since we have a whole eight flippin’ rows of them! Ha ha! But when Tommy went out yesterday to instruct about how to get new potatoes without killing the entire plant, he saw for himself that there were actually TONS of mature, ready-to-pick beans!! ACK!
So even though it was mid-afternoon and really humid, I got out there and picked “our” rows (we planted ours along a fence so they can climb… it was my mom’s idea to put out the other four rows. I guess she wants to can them because that is WAY too many beans for our family! Ack!) I got almost done with all four rows when I started getting alarms that my sugar was dropping.
Good job, Dex! I was determined to get done with that last row so I lingered out there but then Tommy came home and scolded me. sigh Yes, I KNOW he was right to make me go ahead and treat the hypo, but I knew if I went in the house I would NOT want to come back out! heh The choices a PWD has to make are never-ending!
I called Dexcom back and got a younger fella named Caesar who was extremely helpful. He had me press and hold that center button for 20 seconds, which apparently did the trick. For the first time, the screen came on and started asking set-up questions. And it’s worked like a charm ever since! YAY!
Anyhow, so I went on in and started treating my low. It was in the upper 50’s by the time I went in, so I was treating a little conservatively. One thing that drives me nuts is a hypo rebound and at the time, I was so hot that I didn’t have that “eat everything in the kitchen” hunger. But this was a stubborn low. It continued to drop, so I’d treat with a bit more food. Then a little more. By the time Tommy had changed into cooler clothes and hooked up the trailer so he and his dad could go cut some firewood from a tree a friend had down, he was insistent that I get my sugar up so he wasn’t worrying. sigh So I may have downed a little too much of my favorite treat: Bolthouse Vanilla Chai Latte.
When he left, I was exhausted probably both from the low and being in the heat, so I laid down on the couch and waited for recovery. Dex was showing that my sugar was climbing slowly now, so I was confident I had finally conquered this hypo at last. I’m not sure when I fell asleep or for how long I slept, but it was getting a little dark when I woke up with a splitting headache. I was cooled down now and quite stinky from my bean-picking, so I got in the shower. I noticed my sugar was up to 160-something. Not too high, but higher than I like. I bolused a half-unit and got in for my shower. When I got out, my sugar had risen and I was starting to get the “rising” alerts, meaning my sugar was climbing more than 2 points per minute. Ugh.
I bolused another half-unit, not wanting to slap myself back into a hypo. This kept on for the rest of the night. By the time Tommy had gotten home, eaten supper and we were getting into bed, the Dex showed me at almost 300 and I was now treating with the bolus wizard, which is a little too conservative for me sometimes, but I stuck with what it recommended.
By the time Tommy’s alarm went off, I was back within range, thank God! This is the funk-a-doopy line I got from yesterday…
I think Dex and I are going to get along just fine. I’m thinking the next sensor change will go lots smoother and I’m tickled to see a fairly good line today…See?
This is the phone app for Dexcom… so you can see the difference between this and the graphics on the receiver. They are very comparable and are staying almost exact with each other too…no variance in the results from one to the other, so YAY!
I gotta git. I have a ton of beans to break! Have an awesome weekend, y’all and prepare for lots of prepping posts as I start to get ready to head to MasterLab in ELEVEN DAYS!! ACK!!!
So, my Diapals…how many vials of insulin do you suppose you’ve devoured in your diabetic life? If you’re only a few years in, that may be several hundred, or if you’re like me and you’re several decades playing with the Diabeast, it could be close to a hundred thousand by now.
Honestly? I haven’t estimated how many, many, MANY vials I’ve gone through over the years. My mind avoids math and numbers whenever possible, so I’m just not geared that way, I guess. But now that I’m thinking about it, I wonder…
How far would they reach if you lined them up end-to-end? How high would they stack? How far would they all roll? Ha, ha, ha!! That one makes me giggle. I’m picturing setting them all loose and a bunch of white-coats trying to figure how far outside a defined area they will wander, how many will end up in a ditch, how many will be crushed by the tires of a vehicle, how many will be carried away by a curious animal….and probably how much I’d be fined for setting loose so much trash on the world. Bahaha! That would probably be the highest number of all, right?
sigh Don’t get me started on the government and their fines and regulations!
Nope. This post is about pondering how many test strips and such we’ve used. I have a sort-of love/hate relationship with that “dia-art” that seems to get posted, especially during Diabetes Week or Diabetes Awareness month or whatever where people use their used-up supplies to create a sculpture or picture of some sort. I mean, some of them are really neat, but some of them are depressing.
Don’t get me wrong, I KNOW living 24/7/365 with diabetes can be depressing. I get that, people, trust me! But we don’t have to wallow in the negative, ya know? Life’s too short as it is. Why not focus on the positive?
I have to or I’ll go insane. Sometimes I get really down and I know (and you should know it too) that it’s okay to let yourself deal with those times. It’s okay to get thoroughly disgusted with trying to manage your diabetes and just be full-on ANGRY!
But you can’t live there, okay? Have your tantrum, stage your protest, rage against the Diabeast and then take a deep breath, put your big boy/girl pants on and get on with life.
There’s my sage dia-advice for the decade. Bahaha! Don’t dwell on the negatives. To me, this is just what my life is…this is what I must deal with and it’s no punishment (I finally learned that one!) and it’s not my fault (I was 7 years old, after all!) and it shouldn’t make me feel “less than” in any arena in life! I just have to do a few extra things, be a little more cautious, take a little extra care in order to “go about things” the way most other people do.
Which leads me back to thinking about how massive the pile of trash is if I had been piling all my supply junk up all these years. CAN YOU IMAGINE?!?!
Oh my goodness…I get embarrassed if I’m out somewhere and need to throw away the pile of stuff that results in just changing my reservoir and tubing for my pump! It’s like two handsful for me. I couldn’t care less about changing the thing in front of people. If they stare, I’m cool with it. If they have questions, that’s great. But go to throw that garbage away when they didn’t see me unpack and use all the stuff and I get all sheepish. I know! That’s weird, huh? I guess I wonder if they think I’m some loser who doesn’t “care about the earth” or something. Maybe it bothers be because I always think of how much sooner we’ll have to empty the trash compactor when I toss that stuff in there?? Bahaha!!
The things that go through my mind sometimes…sheesh!
So let’s dish…do you know how many vials or other stuff you’ve used over the years? (and if so, I wanna know why you kept up with it! ha, ha, ha… non-mathie types wanna know!) Does it bother you the amount of trash created by the things we need to live? Did you ever think about it before?
Talk to me, people! In the meantime, have an awesome weekend!