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.

Tomorrow is my next follow-up appointment for my eye thing. This time, it’s with a new doctor, one that my local JDRF’s executive director told me about. I’ve already shared emails and a phone call with his office, and he has my files (though not the images) from the other retina specialist.

20140710-105946-39586656.jpgI’m hoping to find out his opinion of what happened and what is going on, truly. It seems that my initial diagnosis of Diabetic Macular Edema is/was/may be actually Central Serous Retinopathy, which is rarely -if ever- related to diabetes at all. Which would mean my complete upset and shattered emotions would have been for naught, and I feel like and idiot. It would mean that the first retina specialist acted on a whim of assumption that because I was diabetic, what happened had to BE because I was diabetic and for no other reason. And let’s not forget the fact that upon my follow up he also failed to even read my chart before coming in and asked if I knew if I was a diabetic or not…

So, for today and tomorrow, I’m anticipating and holding on to hope. Hope that this specialist is a bit more together than my last one. Hope that the CSR didn’t impair my vision permanently by stretching the macula tissue. Hoping that maybe the spots of non-proliferative diabetic retinopathy are the same or better, not worse. Hoping that maybe I can finally get glasses now that this episode is behind me so I can read without headaches. Hoping for good news all around.

 

Vacation time is when I try to unplug from the social media world for a while and just spend time with family. I did sign in a few times to Facebook to upload a few pictures and post a couple of statuses, but I didn’t stay on it like I usually do. I’m trying to wean myself from it, to be honest. Last week was a perfect week to do so.

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We also had a great time just staying at the house and cooking at the beach house rather than eating out at restaurants and things. We made it our home away from home. But the one night we went out, we had sushi… and I ate a Dori… Dori Roll that is. The restaurant also had an amazing silver fish sculpture hanging from the ceiling as you entered the door… it was amazing.

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The weather was wonderful until Thursday, when Hurricane Arthur came through, but even then it was just like a windy rainstorm all day. Otherwise, we had nice sunny days, mid-80 degree weather with a nice breeze and cool beach waves.Yeah, my phone was in my hand a lot of times, but it was to take pictures rather than find out what everyone else was doing and up to.image (3)

It’s nice to unplug every now and then. It lets me recenter my thoughts and decide what path I need to take – whether to continue on the one I am on or to change directions. We all leave our footprints in our social media posts or blogs, but how often do we just sit back and close our eyes and just listen to what the waves are saying? Or where and how we are walking along with them? Walk too close, and our footprints are lost as soon as they’re made in the vast ocean. Walk too far, and our footprints are just empty holes in the sand. But walking just right down that area where the sand is not too hard and not too soft and the waves keep it like a sponge, the footprints are made and they last a good while. There is an intricate dance that happens between the waves, the sand, and you footprints, as is with the dance of life. What does it all mean? I don’t know.. I’m still trying to figure it out, along with a lot of things – with life, my career, my diabetes, my social media, my blog. I did a lot of thinking this week. It was a much needed time to just relax and think… and run after an almost-3-year-old, of course. Do I have an answer for anything? Nope. But I do have a few ideas, we’ll just have to see how they work out.

It was a good week. A relaxing week. An insightful week. But it was a man-I-can’t-wait-to-sleep-in-my-own-bed week too.

It’s interesting to me how seeing things from our past can bring up such weird memories. Take for instance, this meter:

First Meter 2

I can remember the sound of the beep. I can also remember that mine had a deep burgundy red button, not a blue one. I rememeber swiping that strip on the side through that slot beside the display over and over getting error after error until it worked (I think that was to code it? I can’t remember that part). I remember the strips it took, and that you had to press the on button, then prick your finger and press the time (blue button on that one, red on mine) for it to count down 60 seconds, then you were to wipe off the strip with a cotton ball, and place it into the meter, facing the on/off switch, and you would get your reading in 60 seconds or 120 seconds… fuzzy on that too, but I think it was 120 seconds.

I also rememeber cutting those strips in half to save money, and just reading them up against the chart on the back. Your BG was “around” 20, 40, 80, 120, 180, etc on up to 400+ , but with only 2 or 3 other colors, so there could be as much as a 100mg/dL difference between them.

… and I also remember that if I hid my alcohol swab in my cotton ball and wiped off the strip, the color would be lighter, thus looking as if I had a lower BG than what I did.

“Look ma, I’m sorta between 180 and 240″, when I really was around the 400 mark.

Then, came this meter…

Second meter

Ah, the One Touch Basic… with it’s smaller-yet-still-large blood requirement, and no way to cut the strips to save money, yet faster (60 second, I think) glucose readout. Also, there was no cheating with this one. There was no alcohol swipe trick on the strip, but sometimes testing with wet hands did the trick. I remember how thin yet oddly shaped the strips where, and I remember seeing that wildly blinking red laser light beneath it while it was “reading” the strip. And for some reason, I remember testing in my old school’s bathroom (which happened to be a church-school) and having this sit on the changing table while I “did my business”… since, you know, I couldn’t fudge that I wasn’t high…

I think back to how things used to be for me (granted, I came into the “d” world after things like test-tube pee tests and stuff), and my tiny 4 year old finger being poked by this thing:

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to get a blood drop that was as big as the tip of my finger. Even to this day, I still have the habit of squeezing a much bigger drop than needed, becuase in my mind, the reading can’t be that accurate if you’re not giving it an ample sample. (Just in my head, folks, probably not true.) And that looooong dreaded wait that could equal 12 bg tests with my Verio meter.

Looking back on my past and seeing these images, remembering the sounds and the feelings that came along with them… going from 120 seconds to just 5 for a BG reading, from a blood drop that required many minutes of “milking the cow” (a.k.a, my finger) to a tiny, minuscule drop makes me ever so thankful for the technology we have now and the progress we continue to make.

When I went to my endo appointment in April, I was really upset with myself. Not just weight, but also just the amount of insulin I was taking and all. Granted, I was also in school and it was around the hardest part of the semester, so mindless eating was my go-to stress reliever.

Now that I’ve taken the summer off and I’m not stressing over a lot of things, not just school, I’m concentrating on my own health. Yes, I still have my normal duties to think of, but I’m working on a routine that I hope I can stick to when school starts back in the fall. When the semester ended at the beginning of May, I took advantage of the new “time off” I had and steered it toward getting active. My dear friend challenged me to a friendly walking competition of walking 50 miles by July 6th (or 5th? I can’t remember.) I have to say, I bucked it at first. There was just no way. It was getting hot here already and I don’t have a gym membership to be able to use a treadmill, so I didn’t think it was possible. But, I had 2 months to complete it, so that would mean I could just do things slow and steady – maybe 1 mile a day… not to bad, huh?

Today, a month and a few days in, I’m at 46 miles of my 50. I’ve not lost a lot of weight (about 3 pounds I think… It’s hard to know with the swelling that comes and goes). Just this past weekend? Friday night I walked 3 miles, and Saturday I walked 6 (3 in the morning and 3 in the evening). That’s 9 miles within 36 hours. I NEVER would have dreamed of being able to do that in April or even in the beginning of May (granted, I needed a lot of IcyHot that night on my calves!).

Disclaimer: AS ALWAYS, YOUR DIABETES MAY VARY!

But, where I was missing the point, was in my own diabetes care. It wasn’t until yesterday when I looked at my pump and thought, “You know, it’s been a while since I changed my cartridge.” Sure enough, I had changed it last Wednesday. That was 6 days off of one cartridge that I usually get 3-4 days out of. I checked my total daily dose averages for 7 days, and it shocked me.

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My TDD of insulin when I had gone to my endo back in April was around 45-46u per day. Yesterday? It was 29.38. That’s freakin’ awesome. Granted, I also use MyFitnessPal, and even just tracking food helped to bring it down an average of 10u from what my records show, but adding in the exercise brought it down even more.

I’m not saying that this is how it will work for you, but I have my own experience as well as I know others who have told me of how making little changes helps to reduce your insulin needs, and it’s true. Granted, I know I will never be off of insulin completely – that’s just a given with being Type 1, but doing things to help implement a healthier lifestyle through food choices and exercise goes a loooong way to feeling better, at least. If not doing it for ANY other reason, just feeling better is a huge payoff for the hard work (of course, don’t ask me how “good” I actually feel in the morning when I can’t move my legs… hoping that will pass soon!)

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This morning, I had the awesome satisfaction of filling my insulin pump with just about 100u, not my normal 150u. It felt good. I felt like for once, I had accomplished something very cool. Even though the scale isn’t moving as fast as I’d like, I’m loving the other benefits I’m seeing. I’m making progress, and that’s all that matters.

(And, I’m thinking of making this thing a monthly goal of 50 miles….Am I crazy???)