3 Weeks

Three weeks ago, I began what I thought would be just a break from my Minimed pump / CGM combo. I was constantly getting frustrated with CGM sensors not lasting the full 6 days (usually only about 4 days) and knowing that my records were going to be all messed up. I have to hand it to Medtronic though, they stuck it out with me the entire time and without hassle replaced boxes of sensors and even my serter. But with all of the trying and trying and trying, I just couldn’t get them to work. So, I wanted to take a break. Being overwhelmed with that and just everything else, I just didn’t feel like I could troubleshoot anymore. Now, I’m not saying their product isn’t good, because I know a LOT of people who use it and have had a lot of success too, but I’ve learned one thing – there is a lot of truth in the fact that not every device “fits” everyone, and no, they don’t all work the same. Thus, my theory that everyone should get to “date” pump systems before locking in needs to be a must. And I don’t mean just over the weekend. I mean like, for a whole month or two.  I just think with all the scar tissue I have and the sensitivity to the tape the Enlite has, it’s just not worth trying to make it work right now. So yes, in essence, it’s me, not them.

When I got frustrated, I switched back to using my Dexcom. Granted, it’s a pain in the butt to keep up with, but for me? The accuracy over the duration of wear time is much better. It wasn’t until everything happened with my eye that I realized just how important it was. I’m not saying it is super accurate, but I’ve been able to depend on it more than the pump CGM, and right now that matters a heck of a lot more than whether it’s integrated or not. Plus, I have no tape rashes or burns from the Dexcom, so that’s a huge plus for me.

IMG_5503Also, at the time, I had a fling. No, not that kind of fling… a pump fling. Knowing how I am about wanting to switch up pumps between the Medtronic and my t:slim, I had actually planned on going through maybe two cartridges in my t:slim pump at the end of March. I don’t know if the battery works the same as most computer batteries, but with those, if you don’t use them, the batteries mess up, so every now and then I wanted to be able to use it so that just the lack of use didn’t mess up the battery. So, when the eye thing happened, I was on the t:slim. I was not having any issue at all with the pump like I had before, so I am not attributing what happened to that, but I am telling you that because when I spoke with my endo, he told me to “keep everything to the same” until I went for my appointment… which will be next week. So, for 3 weeks now, I’ve been using my t:slim pump. Much longer than I expected, but I have to say, I haven’t had the issues with random, uncontrollable highs that I did before. In fact, it’s been quite the opposite. My control has improved. I still wonder if the cartridges I had were affected by the recall, but that the lot numbers were too “young” to be considered in it (my lot numbers were in the 300′s, the recalls started in the 800′s). I’m not going to lie, I’m sort of hopeful that maybe that was the case and now the pump will work just fine.

And, as an update to the whole eye thing, I have good days and bad ones. For the most part, if I can keep my blood sugar as steady as possible and without any major swings (like, no arrows on the dex, and no BG’s above 180-200 for a period of time), my vision is pretty well clear. But if I have a period of time were my BG has run high for a while or if I have major swings (like when I went from 220′s to 70′s within an hour and a half), my eye is pretty well good for nothing for a while. It’s amazing me how things work and affect us all. If anything, this has taught me, as I said before, it’s not about what you use to control your diabetes, as long as you’re using it the best you can and doing the best you can.

Anyway, that’s sort of a rundown of what’s been going on. I know it’s probably confusing when I just throw stuff out there at random without any true point or purpose other than to just get stuff out of my head, but that’s sorta what I started blogging for anyway.

Sorta Got It Wrong… But Sorta Got It Right Too.

In reading and re-reading and yet re-reading again the article that caused quite a stir in the New York Times, I have to say, they sorta got it wrong… but they mostly, in my opinion, got it right too.

Yes, the cost of health care is soaring in the US, no doubt. This does leave many who are not able to pay for the advanced technology out. I can say from experience that it is great to have the devices as they have helped me tremendously go from iffy control to good control to great control, but if you don’t have the money to pay your part of the cost, whether 100% or just 20%, you won’t have access to it. The fact that companies make so much money off of the technology that so many of us rely on is a shocking one when you have to pay full price for it. What I do agree with that the article points out is the difference in cost between countries. The cost of an insulin pump or even a bottle of insulin is SO much more expensive here than it is in other countries, and that baffles the heck out of me. I even recently had a discussion with a girl who lives overseas and pays only what would be the equivalent of $22 US dollars for one bottle of NovoRapid, which is the other version of Novolog, which has a price tag at my local CVS of $145. My one vial cost could buy her 6.6 months of insulin – a half year supply. That in itself is outrageous. And the fact that the Bionic Pancreas study has an iPhone controlling the pump… a $700-800 piece of technology – controlling a $17,000 setup (two pumps and a CGM) is just…. wow. It makes one think why on earth does a pump cost so much when a phone that has everything but the pump mechanism cost so much less? Is it strictly because it’s a medical device? Is that the area we need to be looking at and wondering if there’s a way to advocate for lower device cost and industry profit?

There was also a post not too long ago in the Dexcom Facebook group that pointed out how much executives of the Dexcom corporation made every year. The amounts per year angered me, but then what am I supposed to do? I can’t run a company of that size, for sure. So, I just order supplies and go on about my business and figure out what I have to shift around for the next few paychecks. Same with pump supplies. If you look at how much profit they make, yes, you will get upset. You will get angered. But you also don’t get to see things from the back-end. The reports that show how much in legal costs and production costs and all of the other fees associated with making these devices that we use. Yes, the cost is going up, but it’s not just the industries’ fault. It’s the fault of the US’ amount of greed from every angle. Think of it this way. There is an end-product of an awesome chocolate chip cookie. In order to make this chocolate chip cookie, there are things needed like eggs, sugar, chocolate, etc. Each component needs someone to make it. The farmer wants more money for bringing you the eggs because the cost to feed the chickens and his family is increasing. The production plant that makes your sugar from the sugar cane wants more money because they have to pay higher wages to the workers so they can feed and provide for their families. The company that harvests the cocoa beans needs more money to pay higher wages to their workers. The electric company that provides the electricity to both the sugar factory and cocoa factory needs more money to pay higher wages to the workers that are working both in and out side of the company to provide electricity to that factory, as well as buy more wire to run the electricity to the factories. The wire company needs more money to pay the higher wages needed for their workers…. once you get down to it, that one cookie cost a LOT of money to make, much more than it would have 50 years ago, and it’s all due to rising cost of, well, everything. And I am by no means saying that a medical device such as an insulin pump or CGM is a cookie, but making the point that these are devices that are nothing more than plastic and wires are designed together in a way that the effort, time, energy and research that are put into these products is what is driving up the cost, as well as the point that it is not just the device manufacturer itself that is making a profit from us, but the companies that are supplying the component parts making a profit from the manufacturer and so on. But, this could also be said of any other company, like Apple or Hewlett-Packard or Android. So, again, what is it about when it comes to medical devices that the cost is so much higher?

Does the industry promote their newest devices? Yes! They are after profit, after all, as is every other company in the world. Are the newest medical devices always needed? No, not necessarily. But the fact is that the cost of practically anything medical these days is outrageously inflated here in the US than it is anywhere else. And while, yes, the cost of controlling diabetes has risen in astronomical proportions over the years, so has almost every other disease. While, yes, it is possible to live with diabetes and manage with a meter, syringes and insulin, it may not be the best option for some, and that’s where the author of the article got it wrong. For some, a pump is indeed needed. For some, a CGM is certainly needed. For some, a talking meter is an absolute must. And to blanket us and assume we are all alike in how we control our diabetes is almost laughable.

No, the problem is not that having or not having access to devices is a “first world problem”, but a medical world problem. You’ll never find a medical company who’s heart is truly and purely about the health of their customers without also having the need for profit, and I doubt you’ll find one who settles for just a mere profit either.

The Follow Up

So, here we are, 10 days after the DME diagnosis, and we have some news. Partly good, partly eh.. not great but not terrible either.

The spot that was diagnosed as being Diabetic Macular Edema turns out to simply be cystiod macular edema, and that’s good. What’s the difference? Well, with cystic macular edema, the cause isn’t always known – and in this case, the cause really isn’t known.. it could be stress related OR diabetes related, though he doesn’t feel that it is d-related now thought it could be (cue the confusion). The location on the vessel where the leak occurred is not where a spot that is affected by diabetes is. It wasn’t one of those dots, or ballooned vessels, that burst. It simply, for some reason, broke open in that area and leaked a lot of fluid. Over the past week, the area of the vessel has been healing, and now there is some slight leakage happening, but nothing like it was when it first happened. The specialist doesn’t want to do anything at the moment other than watch it to be sure that it continues to heal on it’s own.

In other news, I do have spots in my eyes. It has been diagnosed as Mild Nonproliferative Retinopathy. So, basically, my eyes are in the very beginning stages of showing damage. He talked with me about my glucose control and basically even though he sort of gave me the look of “you’re doing an awesome job”, he told me that simply the fact that I’ve had diabetes as long as I have is the reason this is happening, and stressed that I now need to keep a closer watch on my kidneys and feet. The NPR is in a stage that doesn’t require treatment at the time, just needs to be watched for now.

What has me baffled though is when I had a scan of my eyes at my optometrist’s when I was pregnant, spots were there then too, and I followed up with the ophthalmologist that I have now five months later and he didn’t see them. Sort of makes me wonder if he’s missed them for over three years… thus do I need to find a new ophthalmologist? Or will I stay seeing the retina specialist from now on? I sort of don’t know what to do about that whole situation.

So, I go back in 6 weeks. I will have the dye run in my eyes again (yay for highlighter yellow pee and weirdly awesome temporary tan!) and I’ll have more images and pictures taken to see how the edema is and decide on how to proceed from there, though he feels that will have healed by then.

To everyone who have sent me messages and emails and comments, I greatly appreciate your love and support and prayers during this time. It has helped me so much. You guys are the best! :)

Shifting Focus

In the past week, a lot as crossed my mind. Mostly, things around my diabetes control and how to regain it. With a full time job, part-time college classes, and just being a mom and wife all thrown into the mix that is my life, diabetes control has been a foreign language. Even the fact of taking a math class this semester (probability and statistics) has made me that much more irritated to even think about adjusting basal rates or carb ratios (hmm, what is the probability that I’ll mess this all up to heck and back? Hang on while I calculate the mean, standard deviations and z-scores and find my table….0.9845 percent. Oh, but hang on while I decide if it is ethically right for me to make my own adjustments considering I’m not the only one affected by changes I make…..{thank you, Ethics class as well}). My mind is a whirlwind of mess between trying to work toward my degree while trying my hardest not to take away time from family, especially my husband and son.

Which brings me to how I’ve handled things over the past few years. I’ve always been a lover of technology. It’s true – I’m curious about almost any new thing on the market and want to try it at least once. I like finding out how different devices work and seeing how they fit into life with diabetes, even though I know that my life with diabetes isn’t the only one out there or isn’t like everyone else’s (read: EVERYONE’S diabetes varies), and reporting to you my deep felt and honest opinions about said devices or products or foods or whatever. I’ve always sort of had both a “let me be the guinea pig” mentality mixed with a “maybe this will be THE dream product/gadget/whatever”. I’ve done my best to make what I have work, even when I knew it was something that caused me stress and irritation when I knew I had something else that worked better and easier. Sort of like in my P&S class when you’re given the option of either working the problem out manually or through your scientific calculator… but I’m the hard-head that chooses to work out the problem manually because I like to see how things work, and yet wants to use the calculator when it comes to the test.

Where am I going with this? This past week has taught me a hard yet quick lesson. In one day, I went from having a mindset of “yeah, I’ll try anything, my diabetes isn’t going away and my control isn’t going to change no matter what I do so let me switch up things randomly in search of the d-gadget holy grail” to “this stuff is not what matters”. When you wake up one morning and you can’t see out of one eye and the doctor tells you it’s because of your diabetes, you tend to take a hard look at how you’ve controlled it in the past and you strive to do better. You look back at the numbers. You look back at the choices you’ve made around dosing and food and all sorts of things.  You look at your family and think, “was my love of d-technology worth not just sticking to one thing and paying attention to how you controlled things, not your technology”?,  “Was trying to save that cartridge with 100u – about $30 – left in it and the 200-300 BG range you dealt with worth it now? and scrounging of insulin – even potentially skunky insulin or a possible bad site? Was the high BG’s and possible damage really worth that $50 or so now??”

It’s hard.

It’s sobering.

What gadgets and devices I use now no longer matters as long as it keeps me between the lines of my target range. What matters is how I choose to manage my diabetes not just with those devices, but also food choices and exercise and everything else. My focus has shifted away from being mostly around my d-tech to being mostly, if not wholly, around my care. Because in the end, it’s not going to be about how frugal I was with supplies or which meter I chose or what pump I chose or what CGM I chose – if any of those at all, but how I used the ones I did choose to the best of my ability to take care of myself.

Diabetic Dabs Giveaway Winner!

Soooo, Friday sort of slipped by and I didn’t get the winner drawn for the Diabetic Dabs Giveaway as promised. BUT! I did get it done this morning and the winner is…….

DiabDabs - Random Number DiabDabs - WinnerMary!!!!

Which I think it’s ironic. So, Mary.. the challenge is on… Can the habit be broken? You’ll have to let me know how you like these.

 

To the others who commented to enter, please don’t forget, you can go to diabeticdabs.com to purchase some for yourself if you’d like, and THANK YOU for participating!!

My View

The past couple of days has been a roller-coaster of sorts, to say the least. Mostly all emotions, which, of course, sets you out on the sugar coaster. My vision seemed to improve a little bit by Tuesday afternoon in that what I saw was no longer a complete distortion and blur of central vision and clear peripheral vision. It has sort of settled to being part clear and part distorted throughout the entire field of vision. This is not a fun thing to deal with, especially for someone who has a desk job and has to read all day. Yesterday was a test for sure – and I kept having to just stop and take a break to close my eyes because the strain was awful.

I took to Photoshop to try and draw a visual representation of how I see things now:

This is what the picture is supposed to look like.

This is what the picture is supposed to look like.

DME - Distorted

This one is what it looks like through my left eye currently.

My entire view is a bit blurry, but there are areas that distort lines and objects to be funky shapes – sort of like one of those mirrors you see in a fun house when you stand in front of it.. just in a milder form.

I have moved my appointment up from the 18th to next week on the 10th. I started thinking after all of the panic and cry-fest had subsided and decided that I needed to take the one-week appointment option and not the two week. I want to be as proactive about this as I am about anything else with my diabetes. Until then, I’m writing down all of my questions and notes so I can go over everything with that specialist. I want to know that I have covered any and all possible doubt or confusion or curious question with him and not rush through this. This is freaky yes, but I need to get past that and put on my advocacy hat for my own self. *cue Eye of the Tiger music*

Wordless Wednesday : Group Hug

Painting by Taurus Burns

Thank you, everyone, for your outpouring of love and support yesterday through your comments on here, Facebook, Twitter, and text messages. I felt like I’ve been in a huge, comforting group hug by the whole DOC, and I appreciate it and love you all.

The Other DME

I woke up and noticed something different today.

I rubbed my eyes, but to no avail. “Maybe I’m low?”, I thought, but a quick blood sugar check revealed a nice 82. “It must just be some icky funky eye gunk … my allergies have been all over the place lately.” But washing didn’t help it. Cover left eye, right eye is fine. Cover right eye….

NOT fine.

It was as if I was wearing a dirty, dried out contact over my left eye, but that still gave perfect peripheral vision.

I wanted to freak out. I told myself to stay calm. Maybe I just had pressure on my eye for a while and it’s adjusting back. Maybe it’s just I haven’t woken up good enough yet. Maybe this is just something that will pass in a few minutes.

Two hours later, no change. A phone call in to my Ophthalmologist, and I was told to be there by 11:30. That’s never good when they want to see you THAT day. I went on to work, but looking at a computer screen is… weird.

When we got there ( my husband took me just in case), they took me into the pre-exam room, and I looked at the letter chart. My vision was still good in my right eye (20/20), but my left? Had gone from 20/20 to 20/80 and STILL blurry… overnight. With my eyes now dilating, I waited to see the doctor.

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He came in and looked into both eyes. He stared in my left for a good while. As if I couldn’t already see because of the blur, now I couldn’t see because I was blinded by the magnified light. He sent me over to get a picture of my eyes, but had the nurse jot down notes that sounded like “superior and central CSR” (central serous retinopathy), which I had already Googled before going. He then looked and said that he didn’t think it was anything diabetes related but that there was a collection, or blister, of fluid in my eye and some swelling, but that he wanted to get pictures to confirm. “Okay”, I thought, “I’ve already looked this up this morning, this is sort of good news because it typically goes away in a few months, often as spontaneously as it appeared. No big deal.”

Pictures were taken. I saw the spot. It was huge…. on the screen, that is. If you’ve ever seen a picture of your eye, imagine a spot 2 to 2 1/2 times as big as your optic nerve circle, and an oval shape, with the tail extending over your macula.

We were sent back to the room and we could hear the doctor talking with someone. Little did I know, that was the eye doctor there that specialized in diabetic eye diseases. He came in and showed me the screen. He went over what was going on and what happened. Then he said the words I had dreaded I would hear :

This is diabetes related.

It’s Diabetic Macular Edema. Basically, the vessels are leaking fluid around my macula. What I don’t understand is that he didn’t see any blood, just fluid. Either way, I am to go back in a few weeks to meet up with the doctor that specializes in diabetic eye diseases and find out where to go from there.

Right now? I’m going through a whole mixed bag of emotions. Part of me is confused – I just went to the eye doctor near the end of February and they said everything looked fine, yet he said this was something I’ve had for a while now… how long is “a while”, exactly? A few weeks? Part of me is blaming myself – that I could have done better. That this is my fault for slacking off over the past few months. Part of me is angry because I know that I could have wonderful control and complications could still arise because that’s how diabetes is… it’s a evil, silent, slow destroyer. And another part of me is thinking, “You know, you’ve kicked diabetes’ ass for 25 years. Things happen and there’s nothing you can do about them.”

So, now, we wait. And pray.

 

My New Fav. App : CalorieKing, ControlMyWeight

When I had to upgrade my from my Disetronic H-Tron Plus to the new Accu-Chek Spirit years ago, the representative went over several options I had for carb counting. Reason being was because since the Disetronic had no way of calculating carbs, I honestly just knew to eat a certain amount of carbs and to bolus a set amount. It was a strange way, but it worked for me back then. When I upgraded, it came with a Palm Treo cell phone that had their own bolus calculator and logbook integrated into the phone (or you could choose a PDA if you wanted). Anyway, to make a long story short, she suggested the CalorieKing website. I was hooked from then on. All I had ever known was the book, but to have a website with search? Yep. Totally up my alley.

Fast forward until today. Pumps have come a long way since then. Most all of them have some sort of calculator in their system making it much easier to calculate your dose based on various amounts of carbohydrates. Granted, I still stick to having a steady amount of carbs per meal, but I can vary those if I want, but I just have to be mindful of the total amount of carbs no matter what, and CalorieKing remains my go-to source for carbohydrate amounts in foods I’m not familiar with. Since it was available, I’ve had the CalorieKing app on my phone – no matter which phone I use. It’s a staple in my diabetes care. And now, with all the fitness apps out there too, such as MyFitnessPal (which I LOVE), CalorieKing has one of their own as well. It’s called ControlMyWeight (obviously they like their words to run together… like a hashtag… minus the hashtag). In this app, you can set up a set amount of calories you’d like to track for a day, and it also lets you track water intake and minutes of exercise. But, what I love most about the app is you can set it to show the total amount of carbs per meal.

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This way, you can just search for all of the foods you plan to eat, and it keeps a running total. Granted, as far as a weightloss app, it’s pretty fair but expensive in my opinion at $4.99, but I still think MyFitnessPal beats it (because it’s awesome and free). And if MFP integrates an option to total the carb count per meal, I’d absolutely have no reason to look anywhere else. But as far as just finding out how many carbs would be in your total meal for something you may not be used to eating, the Control My Weight app does a good job at keeping a running total for you. And, if you choose to let it be your calorie counting app and you keep a dedicated log in it, you can tap the circle that has the lines in it in the upper right hand corner, and it will give you a summary for that day, with Calories and Carbs at the top. So, if you have a goal per day that you aim towards, you can see how you’re fitting in there.

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Why do I see all of that as important? Because when it comes to taking insulin, it’s good to maintain a good basal to bolus ratio. So, for me, a 60/40 ratio is ideal. Since *my* daily total basal is 20.7u, then my boluses should typically average 13.8u per day, or about 150g of carb. (Your diabetes may vary**). This is also why when I go on a lower carb diet, I typically have to lower my basal rate, otherwise the ratio is thrown off and I go low a lot more often and and up making up the excess with glucose tablets.

To some, this may not be a big deal. If you have the Tandem t:slim or Asante Snap pumps that also have a carb calculator built in, you may not need something like this and could rely on just the standard (and free) CalorieKing app, but if you don’t, this may be an app you might want to check out and see if you like it for yourself.

Friday Find (and giveaway!) : Diabetic Dabs

*Ziiiiip…

Pop…

Shunk…

lick*
If you’ve ever tested your blood sugar, you know what those words are describing. I’ve always been a licker. I never carried extra tissues to wipe my finger on, heck, I rarely clean my finger with more than just rubbing it on my pant leg (which I still do that). That is until I got these little things in the mail:
IMG_2601Earlier this month, Liz Sacco, founder of Diabetic Dabs, emailed and asked me if I would like to try a box of the Diabetic Dabs and host a giveaway for one box. Of course, I was excited because I had already read a post about these from Jacquie  and loved her analogy of saying they’re “like little square maxi pads for your fingers”.. and honestly, she’s right.
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To me, they’re like those alcohol wipes, just minus the alcohol. They are amazingly super absorbent too. The pack is sticky on one side so that you can stick it in whatever meter case you’re using. The only problem is the sticky is a bit too sticky in that when I switched meter cases, I wanted to see how easy it would be to remove and place in the new case… but it wasn’t. It would be nice if there were some sort of pull-tab on the bottom like the 3M Command strips.
IMG_8924
Don’t let the picture fool you though. These little buggers are a bit bigger than an alcohol pad though. One thing I usually do is if I have used a tissue, I crumple it up and throw it away. These are sort of big, and not very easily crumpled, so they to take up some space in your meter case waste area. BUT, that being said, even though they were intended to be used as a one-time-use thing, I typically use one per day, just dabbing my finger on an un-used space.
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I have to admit – when I first got these, I wondered if it would be something I would continue to want to use after reviewing them. The size was the biggest thing to me because it seemed to be a lot of waste for such a small drop. BUT. I have to be completely honest here and say that they are very nice to have. When I switched meter cases, the one thing I didn’t transfer over were the Diabetic Dabs, mostly due to the adhesive part. After just a day, I was missing that little square piece of paper being in there because I had transitioned from being a “licker” to a “wiper”. And actually, the thought of licking anymore had become gross to me, where it never really was before. I have still done it just out of sheer habit in the middle of the night, but it’s certainly something I don’t do out in the open anymore. Using the dabs allows me to be more discreet too if needed, verses someone watching me test then smear a line of blood on my tongue and swallowing (yeah, sounds really gross when you think about it, doesn’t it?).
So now I want to know your opinion. I have a box to use as a giveaway, so following traditional rules, I’m going to ask you to leave a comment below, and next week, I’ll pick the winner using a random number generator. I’ll email the commenter with the news and ask for your mailing address. Simple as that. Easy-peasy. Then, just let me know how you like them after you’ve tried them (not a requirement, but just out of curiosity).

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