Tag: type 1 diabetes
Do you ever wonder what God’s love looks like? Well, I’m going to show you just one of many shapes His love can take. Observe:
Yes. That stack of medical supplies is just one example of the way God’s love looks to me.
Let me explain.
If you read here at all, you probably picked up on the fact that I often worry about money. I honestly don’t worry about much else. Maybe if one of my kids is sick or hurting emotionally, I’ll be concerned and prayerful about that, but things like medical crises and being sick or injured myself doesn’t worry me. I think that God has shown His hand SO many times in that way that I no longer spend very much time worrying about my health or things like that. But money (or rather, the lack of it!) has always had the power to bring me to my knees.
Worrying about how we’ll pay the bills or afford to fix something can mess me up big time. I will fret so much about it that I almost just freeze. Nothing more so than when it comes to the dire necessities.
God has grown my faith and matured me a lot in the past several years when it comes to trusting Him. I don’t say that to brag, but to point out His grace in being patient with me and giving me second, tenth, eighty-fourth chances. It has always bothered me that I worried so much about money. I’m always trying to figure out how to make more of it, how to generate more income or in times of serious need, I start thinking of things to sell and we just don’t even have a lot of that when it comes to making a quick hundred or so. Yes, for us, an extra $20 can sometimes be very hard to come up with, just so you understand my frame of reference.
After some wonderful sermons that have been speaking to me about growing my faith, I determined that I would stop fretting about money and paying bills. I would begin to wait, lean on and trust in God to meet these needs. And before I knew it, a perfect opportunity presented itself.
I was almost completely out of supplies for my insulin pump. I had called the supply company already over a week ago trying to sort through a balance they said I still owed. I explained to them that I have a second insurance policy that should have paid the balance. They said I had one amount from the first of the year already in collections and another balance. After being given the run-around and being told various things by various people, I finally had a sales rep tell me they don’t “participate” with my secondary insurance company.
Nice. After having TWO different people who were supposedly from the company’s insurance department assure me “we will get that filed with your other policy right away”, now a sales rep tells me they don’t even take the other insurance?? ARGH!
I have no patience when it comes to this kind of stuff. It sets me on edge and makes me a nervous wreck. There’s just something about being told you have an outstanding balance of almost $1500 that makes me queasy. When it’s all we can do to get the utilities and mortgage paid and have a little left over for groceries while juggling a stack of hospital, doctor and lab bills from month to month? It just overwhelms me and sets me on a track for a real fear-fest. Echos of “how are we going to afford…” and “where will we get that much…” begin to cripple me.
So here I sat, down to ONE line set and three reservoirs having visions of having to go back to multiple daily injections and thinking about how awful my levels would become without a base rate of insulin from the pump… I just stopped and thought, “Okay, God. You’re going to have to take care of this. I can’t see ANY way to come up with this money, so I’m going to just trust You.” It’s much easier to “trust” God when you have at least an idea of how it might be possible to make something happen. That’s why He does things like lead several million people to the edge of a sea with a murderous army pursuing them…so He can show Himself and it be known that without a doubt, there was NO WAY they could have escaped without God’s provision. (Read the story of Moses)
He erases any chance that a thing could have “just happened” or that man could have had anything whatsoever to do with it.
That’s where He had us. We were already behind on one of our big payments and thinking we would barely scrape by if we paid the big ones this week, then the lesser bills next week. Now this?
I was thinking about how I could maybe use another reservoir but reuse the same line set when this reservoir was empty. That’s risky and can cause an infection at worst or irritation at best. I was trying to think of EVERY POSSIBLE SOLUTION all the while saying, “I’m going to trust God with this.” Even though, in reality, I wasn’t really trusting Him completely. I have to say, though, I was doing better than I would have in the past. At least I hadn’t allowed myself to fall into a deep depression and cease to function. I hadn’t curled up anywhere to cry. I was actually doing better than usual, but still… I hadn’t let go of trying to solve the problem myself while I was “trusting God”.
Shame on me.
The very next day after getting the news that we would have to pay $600 of the full balance before they would let me order again, I got a text from a lady who has been doing my physical therapy. She works on Tommy’s back too, so we have both gotten to know her. She’s really sweet, but struggles with self-worth and depression too. We’d been trying to get her to come to church with us, but it hadn’t worked out so that she could. I ended up sending her this sermon after telling her it would do her a lot of good. I told her to MAKE the time to watch it when she could concentrate and pay attention. So she had called me when she got to listen to it while driving a couple hours to another town for a job. She was almost in tears and said I was right, the message was exactly what she needed to hear.
So then, the day after getting the news about having to pay the huge amount before I could order supplies, she texted to see if I was coming in for an appointment that week. I told her no, I wouldn’t be there til the next week. I forgot to mention, she is now moving to Georgia (moving this weekend, actually!!) so she said she would be gone by then but she had something to give me and could I stop by the office. I said I could come by after lunch.
When I got there, she hugged me as usual and I chit-chatted with the receptionist while my friend went to get this mysterious “thing” she had to give me. When she came back, she handed me a plain old envelope and told me not to open it until I was gone. We hugged again and said our goodbyes. She promised to keep me updated on how things were going, I told her once again she was going to do great and everything would be fine and then I left.
When I got to my car, I couldn’t stand the suspense, so I opened the envelope, which was sort of “puffy” and inside I found 10 bills totaling $70 and a note explaining.
I was floored when I saw that it was cash. I mean, what on earth? I wondered why in the world is she giving me money since I knew she was a bit worried about having enough to make the move and get settled before starting her new, better-paying job in Georgia.
The note explained that she felt led to “tithe” wherever she was spiritually fed. I’m still not sure what I think about that, but anyway, she said I had helped her so much and the content of the message I’d sent her had been exactly what she needed and she knew that was only through God.
I sat there, stunned, thinking this is God showing me He’s handling things. I mean, it’s not every day people just give me such a sum of cash, ya know? So I KNEW it was God but still, in the back of my mind I was thinking, “This is great, God, but it’s not nearly enough… but I am going to trust You still…”
When I told Tommy about it that night, he was flabbergasted too. He said it was just God giving us reassurance that He was taking care of it. He said that someone had offered to buy one of his hobby tools and that might get us another $400 so we were encouraged and went on about our lives hanging onto the peace that God would take care of it.
Yesterday when Tommy came home from work, I knew something was up. He came in telling me he HAD to tell me something. It’s always serious when he comes directly to me instead of checking on something he’s been working on in the shop.
He began telling me about going into a place where he had to buy some things for work and also some that were needed for his dad’s old pickup they’re rebuilding. I thought to myself, “Great. This is going to take forever and there’s a possibility it doesn’t even concern me at all, he’s just excited about something!” I will admit, I’m not very patient when it comes to listening to Tommy tell me some long, overly-detailed story about what they’re doing to that truck. Ha. I don’t know half of what he’s talking about and I’m not super-interested in how it’s coming along until he can tell me it’s done! He gets so excited about stuff sometimes he HAS to tell SOMEone ALL about it, and I am usually that someone. It doesn’t matter to him whether I understand him, whether I care or even if I listen for the most part… he just wants to tell it and ‘get it out’ of his system somehow. It drives me crazy because I seldom EVER do that to him. He would croak if I told him every time I got excited about finding a new way to get stains out of his clothes or if I went into great detail about how difficult it was to do my own nails or something that he has absolutely no interest in. He doesn’t seem to mind that I don’t care how many times they tried the whatsit in the thingamajig to get the whatchamacallit up to 2000 RPM’s or whatever. sigh
ANYway… this wasn’t that kind of tale, thankfully. He started telling me about talking to a lady who worked there who also has type 1 diabetes and was having a bad day with high blood sugars and when her sugar finally came down, she was feeling really awful. He then said they got to talking about supplies and insurance and it came up that we were having trouble getting my supplies. She looked at him and said, “Oh, well the way my insurance is now, I actually have some extras. I can give her at least a box of each.”
Tommy said he almost started bawling the same way I was in tears at that very moment. I was just FLOORED. So THIS is what God was planning?? And all that time I was trying to figure out where we’d find the money to just pay what absolutely had to be paid soon enough for me to not run out and all along He had it more than well in hand.
We made plans to meet her at a local store at noon today and when we got there, she handed a bag through the car window with not one, but THREE boxes each of line sets and reservoirs! I was just stunned! God had provided above and beyond what we even asked for!We thanked her profusely and then started talking.
Tommy knew she hadn’t been in church in awhile, so we invited her to go with us. She seems to want to but is hesitant. Most people are, I guess. Even when they know they need to get back in church and back on track with the Lord, we always seem to draw back as if we don’t know how much better life will be.
We told her we’d call her in the morning, so I’m praying something changes her hesitancy into eagerness or at least willingness to go with us. She’s a single mom with a young daughter so I’m really hoping she will come. Perhaps, just maybe this is the reason God lined all these things up?!
I don’t know, but once again, He has provided. I’m so thankful for His patience and His grace. Now we have time to gather the money needed to at least let me order supplies again. What the lady gave me is almost three months’ worth of supplies. CAN YOU BELIEVE THAT? We offered to give her some money (remember the $70 my friend gave me?) but she refused to take it. I was really hating to have to part with that cash if I’m being honest, but I would have given it to her if she’d taken it. I feel so ashamed that I wasn’t more willing to give it away since it was given to me. See? I am still struggling with feeling a sense of want.
All the more reason I am SOOOO thankful God is patient with me.
Has anything like this ever happened to you? Do you worry about money too? If so, how do you deal with it?
Okay, well, maybe I am SOMEtimes, but not with the blog. My life has just been crazy lately, y’all!
Besides beginning treatment with my new chiropractor-friend from Emmaus, (an hour + drive each way!) I went camping in The Gorge with some of my kiddos this past weekend. Observe:
My eldest kids are all into rock climbing. I have no clue where they would get such a crazy affection, but they have it bad. They’ve gone from rock gyms to climbing outdoors in the real world (where there are no mats on the floor, guys!) and even worse, my baby boy does “lead” climbing which is when they go up a route where there is no rope, only anchors, and they attach the rope as they climb so that the other climbers can then “top rope”, which a tons safer because they are secured with the rope that anchors to the top and is controlled by a belayer. Just trust me, I was not really thrilled to hear that Corey was doing lead climbing now!
We really love going to Red River Gorge, despite the hour + drive. Honestly, we know we’re blessed to have such an awesome natural wonder so near our home! It’s a rock climber’s dream and people from all over the country (& even other countries!) come here for the climbing.
Some of us, however, are just there to lazy around…
Make note of the area underneath the hammock, if you will, for reference in a later story…Yes, it’s every bit as hard and sloped and dangerous as it looks.
Tommy may not have been the only one who “lazied”… after the all-natural a/c, this was my favorite part:
My little Max was always up for an adventure, but he also was no fool about taking advantage of the natural air conditioning available! Neither was I, obviously!
I thought I was going to get by without having to worry about the Hubs getting himself killed, but nope. He had to give it a try too…
Thankfully, he made it back down using the rope and not natural gravity after realizing it just wasn’t gonna happen. He got farther than I thought he might. Ha..farther than I would have! Abby made it to the top of this route, classified as a 5.9 (don’t ask me, but they said this was impressive)! She was worn out afterward, which is to be expected, but I was really proud of the little stinker! She’s lots braver than me!
The poor dogs got worn out considerably sooner. You’d have thought they were the ones climbing rock walls…but I guess it’s not really much fun tromping around the woods in a fur coat, huh?
The Gorge has some very awesome eating establishments, too. Even though we had packed food to prepare at camp, we ended up at SkyBridge more than once. It’s the closest to the campground we were at and not only has awesome food, but a great atmosphere. You just don’t know what to expect from those guys at SkyBridge…
Here’s only a portion of the aftermath of one of our trips to SkyBridge:
We camped at Koomer Ridge campground and it has become our favorite. Abby and Austin had to leave Saturday night and then Corey and Melissa left early Sunday morning, so that left Tommy, Max and myself all on our own the rest of the day.
Tommy and I had a super-relaxed morning, just slowly packing up while cooking ourselves a monstrous breakfast and waiting to watch our church service stream live.
Can’t let you go without a shot of the great cast iron setup we have…some of the cookware is Corey’s, but Tommy made the stand, which also doubles as a free-standing tripod, on his forge.
Most of The Gorge, or “The Red” as the climbers refer to it, is located within Daniel Boone National Forest and the area just abounds in natural beauty and all manner of outdoor adventures. Natural Bridge State Park is another awesome attraction as well as things like Nada Tunnel and the Gladie Welcome Center.
So, referring back to the rough terrain located underneath the hammock that was hung while we were out with the climbers… we moved it from the location in the photo to another place, steeper and with more jutting rocks underneath. Tommy insisted I sit in it since there was no glorious air conditioning rock-crack at the next place. I did and was enjoying watching the kids when he comes over and proceeds to wriggle his big ol’ self up in the thing with me!
I immediately started protesting, telling him he was going to “break the trees”, only it wasn’t the trees I should have worried about. I was really NOT happy that he’d got in there and would have gotten out if it hadn’t been such a physical challenge, but I was thinking about the easiest way to get up out of the thing when PING… I heard the odd noise and immediately felt the hammock move beneath me and BAM we hit the ground, right on top of those big rocks sticking out of the ground and proceeded to slide down the steep slope.
ARGH! Yes, really, I could have clobbered Tommy right then. He still has a red welt on his back and I’m still nursing the bruises. Then I had to explain that all to my chiropractor the next day. Sheesh!
You’re welcome. It seems everyone got a good laugh from that one. sigh
Other “injuries” sustained include my poor foot…I’m making this a small photo in black and white in the hopes of not grossing anyone out, but my right foot has always had this big callous of a thing that always has a shallow split. But when I walked up the steep grades with my Chacos (which have a rough inner sole) I ended up with it splitting further, so much so it began to hurt.
Tommy, also in his Chacos all weekend, but only because he forgot his boots, ended up with terribly swollen feet. Maybe it’s just old age?
Anyhow, I’m really not slacking…I’m just busy adventuring and being battered by nature. Hahahaha!!
Til next time!
And I mean that literally! I’m on Day 20 with this particular Dexcom sensor. I hesitate to announce this publicly because, well, y’know, that’s definitely not recommended by the manufacturer! However, I am out of sensors and have been for awhile. We are awaiting a check that I’ll have to use to pay off the initial costs of getting my Dexcom G5 system in the first place so that I can order (and hopefully afford!) some new sensors and in a few more months, a set of new transmitters. SIGH!
So, I decided to see how long I could wear this baby and it remain #1) attached to me (that’s the hardest part, guys!), #2) pain-free and without signs of infection (none whatsoever) and lastly, #3) remain accurate. That last one has really surprised me. This thing is STILL extremely accurate! There have been a few instances when it was as much as 10 points off from what my fingerstick was, but the rest of the time it’s been as little as 1 point different! That is pretty flippin’ amazing if you ask me!
Can you believe how good it still looks? (that photo is from today, Day 20) Now, I have had a GrifsGrip on it up until yesterday. It had gotten pretty raggedy-looking, and I was tired of trying to find shirts that would cover the thing, so we took the risk and took the Grifs off. Honestly, that’s probably why this looks as good as it does. The Grifs protected it.
I’m not comfortable going without some extra stick-em when I have this on my arm, so I bought a small supply of the grips, which you can find here. I bought a few for my pump port as well since summer time for me is notorious for loose adhesives and lost diabetical ‘attachments’. Since we haven’t been on the bikes (WAIL) much at all this summer, I haven’t needed them as much as I would have, but I have them in hopes of more pedal-time this fall and next summer! I am going to forbid Tommy from taking any extra projects, no matter who’s broke down or begging for his help. Seriously, for both of us, relegating bike time to the back burner has been detrimental. Both of us are heavier than we were at the beginning of summer, and of course, we are much less fit or toned. I just HATE that we haven’t gone and yeah, I could go by myself or meet up with a group occasionally, but I just don’t enjoy it without him and I’d feel guilty if I went knowing he would love to ride too. SIGH What a conundrum! But for reals, people. If there are any of my real-life peeps reading, just don’t even think of asking him to do a project for you unless it’s going to pay extremely well. That’d be the only reason to accept…the chance to pay off some bills. Otherwise, we just HAVE to get ourselves back on those bikes. Our health is suffering. And I am sad.
Okay, the main purpose of this post was to share how freakin’ long I have been able to wear this sensor! Granted, I am new to this stuff…extending CGM time as long as possible, but wow, after reading so much stuff about how short a life the G5 sensors (and transmitters) have, I have been pleasantly surprised. And yes, I’ll be sure to snap a pic when I take this one off so you all can see how well my flesh held up under there. I’m just glad there’s been no itchy reactions!
Wait…speaking of reactions…I’ve used a total of four GrifsGrips and have been really pleased with how well they work, how they are very flexible and keep things stuck on me. I’ve had two for CGMs on my arms and two for pump ports on my stomach. The first on my stomach did a wonderful job. Anticipating an upcoming camping trip, I used another on the opposite side when I changed my sets. That one started itching on day 2. Not a LOT, but enough for me to notice. I tried to leave it alone, after all, there’s not much you can do when one of those things itches. The next day, it was noticeably worse and I tried to let it be, but by mid-day, I tore the thing off to find a perfect outline of the heart-shaped Grifs I’d had on in light red, angry-looking skin.
Sheesh!! Since I just took this last Grifs off my arm today, as you can see in the photo, the skin looks absolutely fine so I’m not sure what’s up with that. I will try them again on my stomach once this heals on up.
Another “stick-em” thing I just got in but haven’t used yet is this…
I’d been hearing about SkinTac for awhile, so I just asked about it on TuDiabetes and jumped in and ordered some. So now I have it to use next time we try extending the life of a Grifs. I hope I’m not allergic to it, but it seems to be pretty well tolerated for most everyone. This also comes in wipes, but I felt the liquid would work better for what I want. Some folks use the wipes every time before even applying their sensor or inserting their pump ports. I may try that later if this works well. Keeping those things attached is a major weight off the mind, lemme tell you! (you may have seen my instagram photo of using an Ace bandage to keep a sensor in place…yeah…not fun!)
So…I guess that’s it until I update you with some pix of how the site looks after I remove this sensor. Check back for the follow up!
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!
So this has happened before. Not often, really, but it happens. Someone you know or another part of your family gets hit with the Diabeast and comes to you for advice.
The first time this happened, I was still pretty young and a younger cousin of mine was diagnosed when she was three. Several years later, after I was in high school, her mom would call me every so often asking about something or other, just trying to understand her daughter a little better.
The next time, I was married and trying to care for a toddler and a baby. One of my very best friends from high school was on vacation with her parents and her sister and nieces when one of them got terribly sick, was taken to the ER where the diagnosis was made. All this took place while they were about 12 hours from home. I think, in this instance, my friend wanted more comfort than advice from me. I didn’t realize it then. I felt like an awful failure because I was at a loss for what to tell her. But I think it was more that she wanted reassurance that it would all be okay, that her little niece wasn’t dying and they would all learn to cope with diabetes and it would become much less mysterious soon.
Last week, it was a friend of mine from our Emmaus community whose 10-year-old daughter, K, was diagnosed. I actually know this lady’s mother better but have spent time with this young mom, M, several times and knew her well enough to reach out first.
Her husband posted a picture of K on Facebook saying something about this being “the first of many pokes for this little girl.” Somehow, I just knew it had to be diabetes. I messaged M privately to tell her I didn’t KNOW what was going on, but I suspected what it was, and that she could contact me anytime if she needed.
She soon messaged back saying the doctors were telling her they “suspected” type 1 since K’s fasting blood sugar was over 250. I tried to comfort her the best I could, but to prepare her for the inevitable. I told her unless it was something off the wall that I didn’t know about, that the diagnosis was likely to be type 1 diabetes.
You don’t know how I second-guessed myself about that. But I didn’t see any use in delaying the fact that was eventually going to hit her. I figured I should start preparing her. I’ve sent messages a few time since they released K, sent some photos of my CGM and my pump site with my cool Grifgrips and some neat memes about how awesome type 1s are and how we can do anything except make insulin. Ha.
It really seems like M and K are both doing really great with the diagnosis and learning this new way of life. I’m so thankful for that! I began by trying to tell M things that K should know, only…most of it wasn’t really applicable to her yet or she wasn’t able to understand them until she’d had more experience with T1D. Then I thought I’d try to tell M things to watch out for or learn, etc. but then I thought, “Who am I to try and tell her that stuff. I am not the mother of a diabetic!” But… I AM a mom, so I can see things from both sides of this a little better, I think.
Here are things I would say to each of them:
Don’t be scared. (okay, I KNOW you’re scared, but please try not to let your child see the panic I know you must be feeling. they need to know mom & dad can handle this. if you cry a little, that’s okay, but don’t break down into a puddle of moans and flying snot. your child NEEDS YOU to be STRONG! you can have that crying fit in private or in the presence of their dad or your own mom, anyone but your newly diagnosed child. thank you!)
Don’t freak out at all the information they may throw at you in the next couple days in the hospital. You have time to learn it and you WILL learn it. Trust me.
As much as is possible, let your T1D child tend to their own business. What I mean is, this is THEIR disease, not yours. As much as you’d probably love to take it away, you can’t so let them learn to manage it as much as and as soon as they are willing or able. The sooner they learn it is up to them how good they feel, the sooner they can hold the reigns and manage their now-fuller-than-‘normal’ life. If they seem content to let you handle it all, begin suggesting they do things themselves: count the carbs in this snack, draw up the insulin for injection, use the alcohol pad on the spot you want your shot, etc. Don’t let them give the reigns to you. DO NOT DO IT. You’ll thank me for this later. Both of you.
Don’t let people tell you about “cures” in front of your child. Stop them MID-SENTENCE. Explain to them that this is NOT the same as “the kind” of diabetes they are talking about. Chances are, they won’t understand. That’s okay. It doesn’t matter if they never understand as long as they get it that any cure they’ve heard about will not get rid of your child’s diabetes. If you have to, tell them “Please don’t talk about any ‘cure’ you’ve heard about in front of my child. It can be upsetting if they think this will work and it doesn’t. Thank you for trying to help, but it does more harm than good at this point.” On your side of things, educate your child as much as possible! Don’t make their whole life about diabetes, but do talk casually about any fad or ‘remedy’ you may hear of. The likelihood is high that they may even come home from school with ideas for a cure from classmates or even teachers.
Give your T1D a break. Don’t be “mad” when a fingerstick comes back high and you know it’s because your child has sneaked something extra to eat or they’ve indulged in a sweet at school or a friend’s house. I know you’re probably not mad, you’re worried and you may not even say anything, but do not let it show that you’re upset. As a child diagnosed in the 70’s with T1D, I was scolded and chided by every doctor we saw. My mom never knew what my day-to-day tests were at all unless I was sick (keep in mind, I started out testing urine, not blood!) but any time it was a certain level of “high”, I could feel the disapproval, whether it was intended or not. I’d catch a certain look or hear a certain tone and that’s a lot for a child to shoulder feeling as if they are bad or disappointing just because they ate the other half of that cookie earlier. Instead say, “Oops! What should we do to get that back down?” and let them help figure it out. If you can tell their sugar is high, say, “Uh oh. Did you eat something extra or did you forget to bolus? It’s okay, you’ll do better next time, but what should we do to take care of this? What symptoms are you having?” Let them realize that it’s serious. I’m not saying blow it off, but don’t make each and every time a big production. Realize that sometimes, no matter what we do, our sugar will do something crazy. Sometimes we get tired of trying. Help us get past this bump and get back on track. Be aware of when this hits your child. It can be a sign of depression so the sooner you talk about it, help THEM talk about it, the sooner they’ll feel better. Be your child’s loudest cheerleader.
To the new T1D child:
It’s okay to be scared. Learning that your life just changed so much is hard. It’s scary to hear that you have a disease and will have it for the rest of your life. It is OKAY to be scared, but don’t forget that you are also brave. There are literally millions of kids out there who have been doing all this insulin and testing stuff for a long time. They’re happy, healthy and can do anything other kids do. This is NOT the end of your life. It’s just a different version. You can make it great!
You can do this. It won’t be easy, at least not all the time. And there will some times that it’s just ridiculously hard, but you can do it. It’s my belief that the strongest of us are chosen to have T1D. I don’t know why there has to be diabetes or why you and I have to have it. For some reason we may never know, diabetes had to exist. Only strong people can handle living life with diabetes. You may not feel like a strong person, but apparently you are because you have T1D. Don’t ever forget that.
It’s okay to get tired. You’re going to have days when you just don’t feel like you can give one more shot, do one more fingerstick or count one more carb. That’s just part of living with The Diabeast. Sometimes we get tired. It’s a lot to do day in and day out, all the stuff that we do to keep from getting sick. No wonder we get tired sometimes. When you feel like this, tell someone who loves you, “Hey, I am sick of being a diabetic. I don’t want to do anything diabetic today. I just don’t want to. Can you help me?” Hopefully this someone will be your parent, who can remind you of all the reasons WHY you have to do ‘the diabetic things’ and how many people love you and would be sad to see you get sick. And you WILL get sick if you just throw your arms up and walk away from diabetes. It doesn’t stay where you left it. It comes with you and makes you extremely ill. You could end up in the hospital or even die if you get so tired you just quit without telling anyone. So while it’s okay to get tired, it’s not okay to quit. Getting tired is normal. Quitting is giving up. Don’t be a quitter! Go talk to someone who will encourage you! Pray, read your Bible or something else that makes you happy but let someone know you’re feeling down. That’s important.
Reach out to others who know what it’s like. No matter how much your parents or siblings love you, they probably don’t have type 1 and they will never know what it’s like to live with it. There are just some things they won’t be able to “get” because they never lived it. Find someone who DOES get it. It can be from an online community (there are TONS out there! some especially for kids!) Let your parent help you find a place you can talk about diabetes and not have to explain every detail to them. It could be an adult who was diagnosed with T1D when they were little like you. You don’t have to be best friends with just T1Ds, but you need some in your life to just hear you out and know that they understand.
Don’t let diabetes limit you. I don’t know what you wanted to become before you got T1D, but don’t let it change now. You know, that if we try hard, keep ourselves healthy and manage diabetes well, we can become ANYthing we want, right? You are not disabled. Even if you eventually “qualified” as disabled because of diabetes, that doesn’t mean you are UNable. It just means you have to try harder, be a little more cautious and plan a little more to do whatever you want to do.
Here are just a few famous T1Ds who didn’t let diabetes stand in their way:
Of course, most everyone knows Nick Jonas has type 1 diabetes these days. That’s because he’s been very bold about sharing that information. Way to go, Nick! Next is Jean Smart. She is an amazing actress who was one of my favorites on Designing Women and later on 24. Bret Michaels, who is a multi-talented performer beginning with the band, Poison. Nicole Johnson, who was crowned Miss America in 1999. Gary Hall Jr. competed and won gold swimming in the Olympics.
Do these people look or sound like quitters? Nope. And neither are you!
These are just a few of the things I’d say to someone newly diagnosed with type 1 and to their parents.
What would you add? What questions would you have? Let’s have ’em!
Pardon the drama up there, but I’m feelin’ pretty raunchy today. Not sure what’s up really. I’m achy and my sinuses are not very happy. I feel like I have been awake for a week straight. (but I promise you, I haven’t) I’ve slept almost all day and nope, I didn’t stay up last night. I was in bed around 11pm which is pretty normal for me. I slept fairly sound in spite of my Dex alerting that I was “high” for several hours. Max never got me up, so I probably slept better than on some nights.
I just have no clue why I’m so worn out and feeling so cuh-rappy other than my night of waiting for a high blood sugar to resolve!
The worst of it lasted for about 4 hours last night. I bolused for and ate a small bowl of cereal (Rice Chex–yay!) with unsweetened vanilla almond milk earlier in the evening. Later, I crashed, so I ate another yummy bowl. (seriously, it had been a few years since I’d indulged in cereal! it’s one of my faves!) Slowly, my sugar rose to a good level…and just kept going.
This isn’t mine. I didn’t snap it because I hate seeing a jagged line.
Don’t you hate it when your sugar is going up and all you can do is watch…and wait for the insulin to kick in? Ugh! I didn’t want to crash myself again, so I tried to refrain from rage-bolusing. So it wasn’t until much later that again, I went low. Not really crashing, but just gradually getting lower until finally. my alert went off that I was below 60. I’m sure most of that was due to it being the time of morning I am normally dropping lower slowly like that.
I got up and ate some peanut butter crackers and drank a little juice. I was so worn out though I just fell back into bed. I had taken my thyroid medicine a few hours earlier when Tommy went to work and I got up to fix his breakfast. And now, finally I have taken the rest of my meds, but I just feel so YUCKY!
I’ve been taking my thyroid meds with some vitamin C powder. Why? I read that it helps with absorption. I’m not sure yet if it’s worth the 8 carbs I have to bolus for the powder, but we’ll see when I go back to the endo. It’d be great if I could get on a lower dose of Synthroid for sure! Right now, I’m taking 175mcg and 200mcg alternately. Fun. (not)
The reason my head feels so crappy is possibly because Friday I met Tommy for lunch at Taco Bell where I got my usual Mexican Pizza combo. I really should have stopped after the pizza since I was feeling pretty full already, but I didn’t want to waste the tacos that came with it and Tommy was telling me I hadn’t eaten enough (like he knows? argh) So I ate part of the taco, which had sour cream on it. I stopped eating when I hit the sour cream, or at least I thought I did. I knew I’d gotten a little of it, but a teeny bit hadn’t been bothering me.
But oh, boy! Saturday morning I was a wreck! I had to drag out the netti pot, I was so stopped up. And we had planned to go with Corey and Mel to this thing in Bowling Green that day. It was an attempt to break the Guinness World record for most people simultaneously hanging in hammocks. I know, kinda weird, but it sounded fun and we originally thought the rest of the kids were going, but a couple of them along with Casey and Tay decided to go to King’s Island instead! hmph! Taylor’s birthday was Friday. I’d been trying all week to get up with her to give a gift to her, but we didn’t get to do that til Sunday because the child has been gone somewhere with somebody every single night/day. The King’s Island trip was part of her birthday, so we went without them and ended up being a party of 7.
We had a good time. We almost melted in the heat, but it was okay since none of us actually died. heh We didn’t break the record. The event just wasn’t organized very well and that may have been part of it. We fell almost 200 people short, but they did raise over a thousand dollars for their animal shelter. I guess it was worth it. Ha!
See? In spite of the 100-degree heat, we had fun. Who couldn’t laugh with this buncha nuts?!
And Mama had a good line most all day, too! YAY!
And almost all of us were really cool… Ha, ha, ha!
So yeah, I have been either busy with stuff or just feeling raunchy or dealing with another issue that I’ll cover in another post and I completely flaked out on last week’s frankly friday. Sorry, guys. Heh. Like there were any of you out there waiting with baited breath, right? Ha, ha, ha!!
Finally, I’m rocking a fairly steady line hovering in the 140-range. Thank God! I hate rollercoaster days!
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!
#masterlab2016 looms ever closer, y’all! I’m so excited! I know I’ve told you this before, but once again, I was so stunned and honored to be chosen to attend MasterLab. I say “chosen” because of my application for a scholarship to attend! And just to clarify for anyone who hasn’t been keeping up with my #masterlab adventure, this is a sort-of conference for diabetes advocates.
Y’know, I never really thought of myself as a ‘diabetes advocate’. I mean, I have the disease, I can’t also advocate, right? At least that’s how my thought pattern always went.
It dawned on me (duh!) that I advocate for MYSELF every day, more so on the days I deal with the insurance company, the doctor’s office, the lab company and the folks who send my supplies.
Okay, stop laughing. I know. It was just that my concept of being a person with diabetes, a ‘diabetic’ if you will, was more along the lines of victim-y, ya know? Even though I don’t think I’ve ever felt like a victim. The idea of referring to myself as an advocate was just brand new.
But who better to push for improvements for, laws protecting and educate about diabetes than someone who lives with it 24/7/365? Nobody, that’s who!
So here I am, rethinking my role and what it means. I tell people my blog isn’t a “diabetes blog” but more a “blog by a person who has diabetes”. And truly, that’s what it is. I can’t imagine writing about nothing but diabetes. My life is too complex and too full to limit myself. Besides that, have you ever noticed that I tend to chase rabbits in my posts occasionally. Not ALL the time, mind you. (stop laughing!) I can’t stick to one topic, folks. It just ain’t happening! And besides all that, I think writing about my “whole” life, not just diabetes, is an even better representation of what living with diabetes is like.
Yes, I HAVE diabetes. I HAVE children and a husband, I HAVE friends, hobbies, and various things in which I volunteer, I HAVE a life!
I have diabetes. Diabetes does not have me. I like to think my advocacy revolves around the fact that I am NOT “all about” diabetes instead of that I am. Does that make sense? We are just like everyone else except that we have to do a lot more thinking and calculating for things the rest of you never really think about. And that’s OKAY!
In the meantime, I’m still not freaking about the fact that I leave for Orlando #masterlab2016 in a little more than 24 hours. I think I’m just too tired right now and I’m trying to keep myself busy. We’re awaiting an overnight guest…Corey’s little sister-in-law is coming to sleep over with us since her boyfriend from Tennessee is staying at his and Melissa’s house tonight. They must be taking turns. He stayed up here last time. Ha ha ha!! So pleased that my kiddos (even the extended ones) are striving to keep pure in their relationships. God will surely bless that effort to please Him!
My eyes are worn out, dry, burning and scratchy and I need to get at least one, maybe two, cannings of beans done tomorrow before I leave, so I think I’m gonna turn in for the day.
I hope you all had an amazing Lord’s day and a beautiful, safe Independence Day!! Remember what it’s all about! FREEDOM paid for with the blood of many patriots!