(I also like to make this face when my diabetes has been misbehaving. If my Dexcom goes off ONE MORE TIME in the middle of the night because of a low or high, I might just lose it. Sometimes I wonder if I will ever sleep a straight 6-8 hours ever again.)
I don’t know about you guys, but I live and breathe by my Dexcom CGM. Since acquiring it a few months before getting pregnant, I’ve learned (mostly) all it’s quirks, and rely heavily on the trends and readings when making decisions about what I eat, when to eat, when to take insulin, when to NOT take insulin, and when to participate in activities – like exercise, or even driving. I can’t tell you the number of times it’s stopped me from doing something stupid.
Prime example: Before my CGM, I would “assess” how I felt when getting in the car to drive. If I thought there was a chance I MIGHT be low, I would check my blood sugar on a finger-stick meter. It might tell me something great, like 100. So, I’d get in the car and drive. Imagine my surprise when, less than 10 minutes later, I’m feeling dizzy and woozy, and luckily have stopped in a parking lot, check my sugar, and it’s 55. IF I had only had a CGM at that time, it may have shown me that my sugar was 100, but with an arrow trending down. Or showing me double down arrows which means REALLY going down fast. In that case, I would have never gotten into the car and risked a crashing blood sugar while driving. Over the years, I’ve steadily lost some sensitivity to low-sugar awareness. Sometimes, I still “feel” it….but a LOT of times, I don’t. As I type now, imagining life without my CGM? Imagining being in a car with my daughter and a low sugar coming out of nowhere with no warning? Going to sleep one night thinking everything was fine, when it really wasn’t? Well, let’s just say, I don’t want to even think about it.
Sue from Test, Guess and Go is waging a war for her husband….trying desperately to get his CGM covered under Medicare insurance. Below is a guest post from her – please read, and act!! One day, it could be you or I without the CGM…..
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I am the wife of a diabetic. I’ve said and written these words so many times, that they seem to now define me. I sometimes feel as if I’m losing my own identity. This journey for me started around 1 ½ years ago. My husband, Marc, who has Type 1 diabetes and hypoglycemia and hyperglycemia unawareness, had been using a Continuous Glucose Monitor (CGM) for approximately five years and it had always been covered by the group insurance from my husband’s place of employment. In June of 2012 he turned 65 and had to go onto Medicare. A few months after that, the CGM he was wearing started to become very erratic. His doctor wrote a prescription for a new one but his supplemental insurance company, Highmark Freedom Blue, denied payment. We began the long process of Appeals.
Long, long story very short…. many phone calls ensued, doctors testified as to Marc’s need, tons of evidence was presented showing the medical need for the CGM….only to receive an UNFAVORABLE decision from a judge in February this year, basically saying no, his supplemental insurance would not pay for Marc’s CGM, and it was not covered under Medicare.
In December of 2013, Congresswoman Carol Shea-Porter (D-NH) introduced a bill into Congress. H.R. 3710 provides for coverage of a CGM by Medicare if recommended by a physician. I have been in touch with her Legal Assistant, Marjorie Connolly, and Representative Shea-Porter is doing a big push among her Colleagues asking for them to sign onto this bill.
If you go onto www.testguessandgo.com you will see my blog entitled “Join the Crusade”. At the bottom of the blog, you will see links to download a sample letter to write to your Congressperson asking him/her to support the bill. You will also see Congresswoman Shea-Porter’s letter to her Colleagues.
Why is this issue so important to me? The obvious reason is that I dearly love my Marc.
For the past year, Marc has been without a CGM and there isn’t a day that I’m not filled with anxiety. He’s had many close calls while driving and it’s only by the grace of God that he hasn’t injured himself or someone else. He’s a courier and spends a lot of time in the car and has had some pretty close calls. Our children both live in Atlanta (we live in Harrisburg, PA) and I used to be able to visit them regularly and now I have to make sure that he can take time off from work to go with me because there is no way that I would leave him alone all night. The worry is with me, and him also, 24/7.
During the time that I have been fighting for coverage of the CGM, I have encountered many other men and women who are in the same situation as Marc is in and need a CGM but can’t afford the out-of-pocket cost of the device and sensors. None of these people ever thought that after having a CGM covered for so many years by private insurance, that Medicare would not cover it. I have also met many men and women who will soon be entering the system, are presently covered by their private insurance and are worried that they will not be able to get a CGM or sensors once they go onto Medicare.
This issue is so important and the only way to change the Medicare guideline for the CGM is to put pressure on our Congresspeople asking them to vote YES to H.R. 3710.
Recently, a group has been formed on TuDiabetes called the CGM Reimbursement Advocacy Group. http://www.tudiabetes.org/group/cgm-advocacy. The purpose of this forum is a place to try to gather interest in CGM Advocacy; to share information about CGM efforts, craft common messages, link useful research and connect individual advocates.
Also, if you go onto https://www.popvox.com/bills/us/113/hr3710 you can click on Support, put in your name and email address and a notification will be sent to your Congressperson showing that you support H.R. 3710. There are comments from diabetics, wives, children and friends stating why they support the bill. I find them extremely interesting to read.
Won’t you please take the time to do these things? I can’t stress the importance of raising up our voices loud and clear and letting those in Congress know that for those who need a CGM, it’s a matter of life or death.
Sue Berger – writer/contributor at http://testguessandgo.com
I had such grandiose plans of what I was going to do for Diabetes Art Day yesterday. I love art, I love creating, and I love getting together with my group of D-girls on a regular basis to hang out, chat about our lives, discuss the latest in diabetes technology, or commiserate on whatever random topic comes up. (Like poop – for some reason, poop came up in a lot of our conversations last night?? Poop is funny! And only some of it was related to our kids. But I digress.)
It was only fitting that we should have our girl’s night on the same day as Diabetes Art Day so we could all create something together (like we did last fall.) I had all the supplies set out and ready:
But you know what? We never got around to making anything.
We thoroughly enjoyed our meal together….a hodge podge of appetizers, snacks, and a couple of yummy desserts that everyone had a hand in bringing or baking. There was wine (of course! This is MY house we’re talking about) and general, “hey, how are things going?” talked about around the table. We laughed, we nodded in agreement, we shook our heads in disgust, we heard beepings of CGMs going off, we noted blood sugars from fingerstick meters, we pumped up the insulin to cover all the delicious carbs we were consuming, and we just had a good time.
The “gift of gab” is not a present to be taken lightly. To be able to interact and share and love and accept others regardless of different beliefs or opinions is so very worth it, especially when you all have a common bond that brought you together. For us last night, that bond is diabetes, and the amazing art of it all is our ability to fellowship with one another. Love you D-girls!!!
I wish I could charge my diabetes by the hour.
I want to charge it for every single minute that it has taken me away from something – away from enjoying my free time, away from my family, away from work, you name it.
It always seems like I see this:
at the most inopportune moments. Like when:
- I am about to call into a conference call/meeting for work, that I need to facilitate.
- I am about to take a shower.
- I need to get in the car and drive somewhere.
- I have a boatload of emails to answer.
- My daughter says, “Let’s go outside and play!”
- My husband says, “We need to leave in 5 minutes.”
- I am about to do anything that requires any amount of concentration or attention.
I see that downward arrow, and can almost hear the screeching-car-wheels sound….drop everything, do not pass Go, and deal with this NOW. Time drain in action. And let’s not even go into how much time it takes away for pump site changes, blood sugar checks, CGM changes, doctor and endocrinologist visits, lab work, blood sugar logs, food journals, guesstimating your carb counts, planning your day around eating and exercising, etc.
If I could charge diabetes by the hour…I wonder how much money I would have?
I am terrible at math, but let’s say I charge diabetes a mere $30 per hour for the undivided attention I have to give it. And for all the “stuff” that goes with having diabetes – doctor/medical visits, the finger sticks for blood sugar checks, the changing outs of various devices, the dealing with a low or feeling wiped out because of nagging highs – we’ll say my diabetes, on average, takes up 4 hours of my time each week (I feel this is a highly conservative estimate, but I have to start somewhere – as we know, diabetes is really a 24×7 job!)
4 hours x 52 weeks x 20 years = 4,160 hours of my life since I have had diabetes. At $30 per hour, that is $124,800!!
Oh, if I only could have that money to put into my retirement account, or pay off our home mortgage, or do something crazy fun with!! Diabetes….someday, I will find a way for you to pay up, if only by helping eradicate you from taking so much precious time away from me and from the rest of the D-world.
Appropriately, I had a work “meet & greet” event last night that occurred over dinnertime. Random “finger foods” and appetizers were served like egg rolls, pot-stickers, chicken fingers, cheese, crackers, fruit, cookies, brownies, jalapeno poppers, etc. Pretty much a smörgåsbord of “guess how many carbs are in THIS??” nightmare. Luckily, there was also wine on hand, and my sugars stayed amazingly level, even amidst the stress of meeting executives that could someday decide my employment fate.
As for “awareness” for today….taking some more liberties here with this prompt. It made me think of the awareness that my husband has of my diabetes…or the lack thereof in some areas of my diabetes care.
Now, my husband knows what a low looks/sounds like. The only time I’ve EVER had someone call 911 for me was when he and I were first dating, we were out on a walk after dinner (it was in the BCGM days – before continuous glucose meter), and I crashed and passed out on a stranger’s lawn. He was a trooper through that….and continued to date and eventually marry me – such a keeper.
But as far as all my testing, pump site change-out, CGM sensor supplies, what I use to do what, etc….he’s never been much involved with that. I mean, why should he? I’m the one in charge day-to-day of poking, prodding, and inserting medical devices into my body, and I tend to do a lot of site changes and CGM sensor change-outs when he’s not even around, so he really doesn’t see it much.
Last night, we were upstairs watching How I Met Your Mother (catching up at last on season 8 so we can get to season 9 and finally find out who the heck she is), and we had about 30 minutes before bedtime. My pump was vibrating it’s “Low Reservoir” alarm – 10 units wouldn’t get me through my basal rate overnight. I would need to change out my set before bedtime, but I was too lazy to go downstairs and get my supplies, and I’d be half asleep once we finished TV. He offered to go get the “stuff” for me, so I gave him the vague directive of, “Under my sink, in the plastic drawer, I need an infusion set and insulin cartridge, and the black bag on top of the drawers.” Here was what he saw:
He brought me the black zipper case/bag that contains my open insulin, set holder, and various pump accoutrements = score 1 point! He brought me an infusion set = score 2 points! And brought me a sensor set for my Dexcom CGM, saying as he handed it to me, “This isn’t the right one, is it?” To his credit, I only had a couple of reservoirs left, and they were obviously hiding in this messy drawer that is pretty much as unorganized as I get. He re-confirmed with me that it would be a “cylinder-looking thing” and then successfully found it and brought it up to me. I love my husband. And lots of times, he’s more aware than I give him credit for.
When someone says, “check,” my first thought is about checking my sugar. I check it (what feels like) a hundred times a day because I am constantly looking at my CGM – continuous glucose monitor. Before I got my Dexcom Seven+. and then the G4, I would prick my finger 10-20 times per day, depending on how wacky my sugars were making me feel, I checked it before and after every single piece of food or sip of drink I would put in my mouth, and I checked it randomly in the middle of the night, especially if I woke up sweating. It was a pain – literally as well as metaphorically.
Nowadays, I don’t do nearly as many finger-sticks. I rely a LOT on what numbers my CGM is showing me throughout the day, all day, everyday. I still do finger-sticks to calibrate it, but that equals maybe 4-5 per day on average – a significant improvement.
This picture shows the teeny tiny piece of wire(?) that gets inserted under my skin and essentially is the “sensing” part of the CGM sensor. People always ask me, “Does it hurt to inject that under your skin?” Well, yes, sometimes it does. A little bit of a sting. And occasionally a vampire-looking bleeder. But that sensor lasts me for many, many days, and saves me from the 10-20 finger-sticks per day that I would have had to do before. I’ll take the “little sting” every so often, as well as the MUCH needed data and trends of how my blood sugars are behaving, thank you very much!
(Diabetes Awareness Month Photo-a-Day guide located at www.sixuntilme.com)
This was my Dexcom G4 view for the majority of the day yesterday. It didn’t start going up until I consumed a VERY carb-filled Italian dinner last night, but even then, it spiked up, then sorted itself out pretty predictably (after a few hours.) No post-breakfast spike yesterday morning or this morning either. What am I doing different? What am I eating different? Nothing out of the ordinary, as far as I can tell. Could it be a new bottle of insulin? Could it be the new-ish infusion set site absorbs better?
This diabetes thing……always confusing. always a moving target, always a celebration around the corner for the beneficial accomplishments, or a curse on those not-so-controlled days.