I was diagnosed with diabetes at the age of 4, so there’s not much I remember about not being  a diabetic. And while it would be a lie to say I wouldn’t want to be cured (umm, hello?! FREEDOOOMMMM!), I can’t honestly say there wouldn’t be a couple of things I’d miss.

It’s true. You can call me absolutely bonkers, but there are some things, like the excitement of hitting the ‘holy grail’ of a perfectly calculated bolus, or obtaining a 24-hr ‘no-hitter’ on my Dexcom. These rarities are special moments… the “pats on the back” that help me get through at times.

I’d miss all of the friends I’ve gained simply because they’re also diabetics. I’d miss the opportunity of spotting another “diabetic in the wild” and the feeling of the instant connection.

cWC3VryQce5kbpXB.jpgI’d miss the technology. This one is the biggie. True, there are tech geeks out there… but they all have the same common things to be tech-geeky about. Being in this d-club, you get to be all geeky about technology that the usual Apple or Android geek doesn’t get to be geeky about. It’s like a whole other level of geekiness. My obsession over d-tech will no longer be needed, and honestly, I would feel a bit lost. Okay.. a LOT lost. It hit me a few weeks ago when my husband was having an asthma flareup, took a puff of his inhaler, and looked at me and said, “What? I don’t get to get all the fancy cool gear for my condition like you do..”. He was picking, but it’s the truth. Granted, you can be as basic as possible with simply insulin pens and a meter as well with diabetes, so it doesn’t always have to be so tech-oriented. But part of me has just become so… so…. attached. Maybe I’ve become too attached (ha! pun!).

Then there’s the question that rings in my mind sometimes… is there ever a point where you become too much of a control freak over your diabetes that you would feel lost if you didn’t have it to control?

Thinking thoroughly, if you were to be cured today…. what, if anything, would you miss?

If you haven’t heard of this product, Unisolve is a product that a lot of diabetics use to remove the left over glue-gunk from old infusion sites or sensor sites. Some even use it to loosen up the site before removal since it works it’s magic to de-stickify the glue and make for easier, less-painful removal. But what if there was another use for it… something not even glue-related??

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Last night, I wanted to try to clean the dirt off of the edges of my white t:clip. I love that it’s a white t:clip just as much as I hate that it’s a white t:clip. It’s so nice and clean until it’s not nice and clean. Then, it’s a bugger to clean.

I made the mistake of wearing the white clip with my dark jeans one day and the rounded edges became dirty-looking. That, coupled with the way that one sort of naturally holds the pump to bolus, of course, made it look dingy. But it’s not a sock and I can’t soak it in bleach…. though I tried. I even had it sitting in bleach toilet bowl cleaner for a while last night, and it helped, but not very much.  When I posted a pic on Instagram of my obsession with the t:clips, I made mention of how the white one was sitting in bleach…

My friend Lorraine commented about how she had used Unisolve to clean a pair of white sandals with it. So… what did I do?? Yep. I pulled one out and I scrubbed a bit and… well, whaddaya know?! It came clean! For the most part, anyway. It does have a sliiiiight smudge left, but nothing that is super visible now.

I knew my pink case had some of the same discoloration, so I tried it on that one too:

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Before

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After

Well, well, well. This may be my go-to to clean off my t:clips from now on.

Just be careful and be sure to rinse or wipe the solution off after using it. I don’t know if it was just that or the combination of using both the bleach AND the Unisolve on the same spot, but part of the matte finish started coming off of the white one this morning. The pink one seems okay though.

If you were to see this reading…

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what would you think?

“Yay! Right on target!”

or

“Man, that’s a good number!”

or maybe even..

“Booya, baby!”

 

But what if you also could see this??

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Your response might be a little bit different, now wouldn’t it?

Everyone with diabetes has ups and downs. The severety and quickness can be different for each one. And it doesn’t discriminate based on age either. Seniors need access to CGMs just as much as any other person. Tell Medicare just how important these devices are, and ask them to cover them by signing the petition.

A few months ago, Michelle Litchman ( a nurse practitioner, diabetes specialist, and friend), asked if I would be willing to take on a challenge… a “Fakebetes” challenge.  What’s a “Fakebetes Challenge”, you say? For one week, I’m paired with a non-diabetic person who’s in the medical field to help give them a inside view of living with diabetes. Rather than them simply being hooked up to an insulin pump or giving injections based off of their own blood sugar readings, the challenge for me is to come up with different blood sugars and scenarios based on what might actually happen with a person who’s pancreas isn’t up to par, and act as the other person’s diabetes – meter, CGM and all. It’s on them to actually follow through with testing their own glucose levels and taking the required amount of “insulin” (saline).

I was matched up with a wonderful lady named Rachel… who happens to be a CDE and dietitian. And boy did I have my work cut out for me. This chick knows her stuff, and it was challenging to try to think of curve balls to throw, whether they were fast ones or ones that would take time to develop. Since I was basing my “fakebetes” scenarios based on what she was doing at the time, and over the past few hours, it became harder and harder to think of those curve balls because most of them she took without missing a beat. Last week, she was attending the AADE 2014 conference, so for most of the challenge, she was having to work around not only not being at home, but also being “newly diagnosed”.

Welcome to the Challenge

Different challenges were thought of, like how important it is to eat on a relatively consistent schedule if you’re taking Lantus – and how skipping a meal could be bad.

38 Low

I think Rachel will probably not look at another pack of fruit snacks for a while though, as most of the second day was spent low.. you know… too much Lantus and all, which often happens with newly diagnosed people, and we learned the importance of keeping quick sugar around too since she was caught once without anymore fruit snacks or any other quick sugar. We also went through scenarios of repeated lows after correction doses to cue into a sensitivity factor change.

Or how after having diabetes for so many years (or, you know, days in our case), some weird things can happen, like delayed food absorption…

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And within that, one of the really hard realities of diabetes was seen:

Gastro-low 4

 

I have to say the whole thing was fun. It was challenging for us both as she was kept on her toes by a few random numbers,

Late-night Low

 

and I was kept on my toes by having to think of scenarios that went along with what a person hundreds of miles away from me was doing. It was like a weird game of poker.. which she eventually called my bluff:

 

 Called my Bluff

And, really, what’s the fun in a challenge when you can’t taunt a little bit…

3 hour doozie

The only thing this challenge could not replicate is the emotional factor of actually living with diabetes – both newly diagnosed and over time. Though Rachel took everything in stride, there was something I could never convey over text… the emotions that come along with being high – the guilt, the frustration, the “why did this happen? I did everything right?”, the just plain suckiness that you feel overall after having 2 or 3 highs in a row… and though we touched on a very real point of the fear that can happen when one goes low, especially one after a meal, there’s just no way to convey it fully over text.

In the end, it was super fun. We not only talked diabetes, but we veered off into all sorts of chats – diabetes devices and technology, of which we’re both geeks about, and our kids, and our love of mac and cheese. I gained a friend this week, and to me, that was worth the challenge. I hope I was able to teach her something or at least help her to think a bit harder and see beyond a number. Then again, she taught me that there are some kick-butt CDE’s out there that stay on their game more than we may think.

Cured

Now… I need to track down that darn Fakebetes Fairy Squad…

 

To read Rachel’s take on the experience, you can go over and read it on Michelle’s post today! Also, if you’d like to volunteer to be paired with a health care professional (HCP), please either reply here or let Michelle know on her post today. She has a few ready to go, just needs a few volunteers to match them up with!

I always wait on pins and needles my A1c from my endo’s office. Since they do a blood draw to check other things as well, they don’t use one of those fancy-schmancy know-while-you’re-there machines.

Usually I check my Dexcom reading report for the past 3 months and see what the average is on that and most of the time, I can estimate my A1c myself within a few “points”. This time, it was just the same – I had an average of 141, so I estimated that I would fall right between 6.0 and 6.5 based on my lab’s scale… and I did.

a1c

6.3

Honestly, I was hoping for a bit lower, but I knew it probably wouldn’t be since I had a rough week earlier in the month with BG’s in the 300-400 range. But I’m super happy with it because it’s finally back in my personal sweet-spot area of where I like to maintain my A1c after a year of trying to get it back down.

Other things were checked as well, like my TSH and Vitamin D. As usual, TSH was in good range, so same dose of Synthroid as always. I have yet to get up the guts to ask him to run a full thyroid panel though. I really would like to know where the other levels are and also to get an answer to whether it is autoimmune or not (since I don’t have an enlarged thyroid, he won’t diagnose it as Hashimoto’s).

As for Vitamin D? Well, after having been on 12-week booster doses twice this year, he’s placing me on a maintenance dose as my levels are just barely meeting the minimum. My levels have never fallen into the “deficiency” range, but stayed between there and the “acceptable” range, so I guess you could say I’m Vitamin D insufficient.

So, that’s where we stand with all of that. Let the new 3 month countdown begin!

 

And as a sidenote: He was impressed with me for staying with the t:slim for as long as I have, and have stopped switching up so much. I told him how pleased I’ve been with it since the new cartridges, and how it seemed to have solved my problems I had with it before. Honestly, I can say that I’m a full-fledged through-and-through t:slim fan at heart. I’d probably cry if anything ever happened to it. #tslimpride

 

This may not mean a lot to some, and some may have heard this before – quite often, even – from their endocrinologists. This is something I rarely hear from my endocrinologist – usually, if I ask about trying something new, he’s totally on board with it and sort of lets me do my own thing. I don’t think he’s ever told me specifially “no” to something I’ve asked about wanting to try (in regards to my diabetes, that is)… until yesterday.No

It was the weirdest feeling.

My hopes were sort of up that he would let me try Victoza along with my usual care plan to see if it could help “flatten” things out. I’ve seen a lot of good success stories from other Type 1′s who’ve used it and seen the graphs shared, so it had me intrigued so much more than the Symlin that I had tried before, for the simple fact that it was once a day, not at every meal. Plus, if it helped me curb my appetite, that would be even better.

But, when I asked about it, he told me no. He wouldn’t prescribe it because it’s mechanism isn’t approved for Type 1′s, whereas Symlin is simply replacing the hormone Amylin that the pancreas also no longer makes.

Part of me was upset. He’s never told me no. Hopes – gone. But then, part of me was overcome with happiness and satisfaction that he told me no, simply because it made me feel like we actually are a team and he’s not just going to give me anything I ask for. I almost wanted to hug him.

So, my quest continues for better control through things I’m learning about in Dr. Bernstein’s book and performing trial and error with what I have available to me now. (Though, I just have to interject here and say that my endo was VERY happy with my control over the past 2 weeks! And honestly, it’s not been terribly hard! But more on that stuff later.)

So, there’s this app from the International Diabetes Federation, or IDF, that lets you snap a photo and have the World Diabetes Day blue circle placed on top of it… automatically. No photoshopping, no Twibbon-ing, nothing. It’s all right there on your phone, in the app.

 


Take your photo with your camera right then, or choose a photo from your photo library.. you know… since you might not be selfie-ready at the moment or you might already have an awesome selfie in your library to use…. Don’t want to have your face in it? That’s okay.. you can take a picture of anything, like your diabetes supplies, a BG number, or an infusion site!

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You can choose to share your photo or download it (which, of course, you may share it even still after that… I did so I could put it on Instagram too :) ).

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The only thing I wish it would let you do is to place the circle onto a square photo (yeah, I’m TOTALLY a square pic girl), but you can move the circle to where you think it would be there if you cropped the photo for Instagram or a profile picture.

Of course, in the app, you can also give the IDF automatic permission to use your photo in their Blue Circle Selfies Flickr account, to help spread awareness. I did, and a few of mine are already up. But if you change your mind, you can turn it off if you want to later.

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I have to say, I love this app. It’s simple and easy and it lets me put the WDD circle on my pictures. Go get it. Play around with it. Add your photo to the other #wdd #bluecircle #selfies and let’s share the blue circle love.

IS PRETTY DARN AWESOME!

If you don’t have any idea of what I’m talking about, let me sort of give you a little run-down. There’s this group that I found on Facebook a couple of months ago after seeing a parent’s photo of a Pebble watch with their child’s Dexcom CGM data on it and they linked to the group in their reply. It was all comprised of an Android phone, Dexcom, a few cables, and some web programming. It was pretty awesome and intriguing to see how these parents were able to get this system set up so that they could monitor their kid’s sugars from a far – whether they were at work and the kid was at school, or even while the kid was at summer camp. It’s been an exciting thing to see happen and to also see the parent’s joy when they finally get their own “rig” set up. Of course, I wouldn’t be able to give you a better job than Kerri did of interviewing the creators, so you can hop over here (part 1) and here (part 2) for her posts about these wonderfully awesome guys.

image (4)Then I got to thinking. Okay, I really want to do this… but what is my justification other than I’m a glutton for anything diabetes tech related. I was green with envy and wanted it too, but for what reason? I couldn’t justify in my head spending a lot of money on a setup that I don’t need 24/7 like these parents do. I’m the one who takes care of my diabetes, so I really didn’t think it was necesssary, but I reeeeaaally wanted to see if I could get it to work. Then it hit me…. all I needed to buy was the cable to connect my Dexcom to the Nexus tablet I had… if the Nexus tablet would be compatible with the system (it has to be an Android device, and it has to be OTG compatible).  After reading into everything, I realized that this would be a bit over my head to learn quickly ( I admit, I’m a slow learner ), and since I’m married to a tech genius (well, he may not technically be a genius, but he is to me) I figured I’d let him tackle it for a project. He had it up and running within a couple of hours.

Now, for the real question… does this really have any value to those of us who are the people with diabetes? The ones who are adults? My answer? YES. And here’s why:

  • If you’re someone living alone and having issues with your sugars and want someone – a parent, best friend, etc – to help you keep an eye on your sugars for a while, it helps them be aware a bit more easily than asking you every 5 minutes how you feel or calling every hour or so.image (5)
  • If you’re married, and just say your spouse (or you) travels a lot, it’s cool to be able to have way they can set up their phone and open the webpage where your CGM Cloud is, set the screen to never go off, and turn the sound on. Then they have a CGM alarm at night as well as you so that way both of you can still keep an eye on your sugars while they (or you) are out of town.
  • And (the most valuable one to me) at work, I can keep the setup in a drawer or in my purse and just have a separate window open to my CGM cloud site and if I’m with a client, I can discreetly just click the tab, check to be sure everything’s okay, and click back to what I was working on. No need to fish out the receiver and look as if I’m inappropriately checking a text message or changing a song on my iPod (to which I’m not wearing any earbuds to).

Currently, I only have my setup available to use over WIFI. I really don’t have a need to have it going on a cellular data plan to upload all of the time, so I’m okay to unplug it every now and then. Though, when I do, I have a widget on the sidebar that you’ll be able to see what I see as well.

The CGM in the Cloud is pretty awesome, and I’m so glad these guys have worked so very hard to bring us this wonderful setup. I know it has helped to ease a lot of parents’ minds, as well as my husband’s and my own.

After this year, I don’t think I’ll ever be able to say this enough….

KEEP A CLOSE EYE ON YOUR EYES!! Don’t miss those appointments! (And if you have skipped one recently, go pick up the phone and call now…) Make sure you trust your doctor and if something looks funny to you, get a second opinion. If there’s something he can’t explain, get a second opinion. If he seems too rushed to give you a thorough (and I mean thorough… he should inspect every square micrometer of your eyes in my opinion) exam, then find someone else.

Why?

Because I didn’t… and I should have.

I should have went with my gut when my ophthalmologist seemed to be rushing me. I should have gotten a second opinion from a different doctor 3 1/2 years ago when my regular optometrist saw teeny-tiny yellow spots but when my ophthalmologist looked, he said he couldn’t see anything. I trusted him in February when he told me that everything was “all clear” and “no signs of damage from diabetes”. Those words now cut like a knife… and they do over and over again when I see others post of a “no-signs” bill-of-health following their own appointments.

The fact of the matter is there is damage. What happened in April is diabetes-related.  What I have is Mild Non-Proliferative Diabetic Retinopathy. Which you wouldn’t think much of since a lot of people with diabetes – especially those having diabetes over 20 years usually do have some spots of it. But what they don’t tell you is that by having those spots, you have or may have had Diabetic Retinal Artery Micro Aneurysms – which is what happened in my case. Usually these can happen anywhere in the eye, mine just so happened to be right in the area of my Macula, so when the area of the artery began to swell and leak fluid, the fluid caused a ‘blister’ to happen – very similar to Diabetic Macular Edema, though mine healed on it’s own without treatment.

What bothers me is when you hear of complications from doctors, it’s the worst of the worst. That if a complication happens to you, it’s the most severe form, and anything less than that need not be worried about. What happened to me was a very thin line between having what I had happen – where the vessel simply leaked fluid and some other stuff (which looks like yellow spots – but they’re protein and cholesterol particles from the fluid – and makes for some interesting looking pictures) and having it burst – which would mean the micro aneurysm would have burst and bled out and possibly needed more treatment than just “waiting it out”.  And of course, the “what-if” that bothers me, is what if this wasn’t on my macular area, but somewhere else… and I wouldn’t have known… and the disease could have progressed further. Other spots may not have been examined as closely as they were until a year from now… or knowing me… a few years from now.

So, here’s my friendly PSA – Get your eyes checked regularly. Don’t skip appointments. Don’t be afraid to have to travel to see a good doctor if you feel you aren’t getting adequate care where you are. Ask questions. Get answers to anything you need to know. Get referrals from other patients. FIND a retina specialist that will take time with you and explain any- and everything you want / need to know.

Maintaining the health of your eyes is more important than the fear you have of going to the doctor.