Hi guys! Geez, has it really been a MONTH since I blogged here??!?!?? I can’t seem to wrap my head around that. I’ve been super busy outside of my blogging and social media world with trying to catch up and get ahead with school before going to the 2014 Diabetes Mine Innovation Summit near the end of November and then we had Thanksgiving and all of that lovely stuff.
Plus, I’ve not been really diabetes blog talk-y lately because anything surrounding diabetes surrounds something else that has been very important and prominent in my day to day life. Something we’ve not wanted to share until we thought it would be okay to do so… A little something that’s about 10 weeks in the making and will arrive in July of next year…
We truly are surprised and excited. Everything I’ve thought about blogging about lately would include the pregnancy, so I hope you excuse me for being silent until we could find out for sure that everything is going okay.
I’ll blog a little more later about how things are going and how things are different from last time, but for now, I just wanted to get the word out!
I received an email from Tandem’s marketing associate this morning regarding Tandem’s new partnership with Diasend. As of now, professionals with Diasend Clinical can upload your t:slim into their Diasend database along with your Dexcom (if you have one) and your meter (if it’s one of MANY listed) and have all of your data in one, nice, neat place.
But is it for professionals only?
Well, my tech-oriented mind didn’t want to just assume it was for Clinical people only and tried Diasend personal. I still had an account from when I was on the Animas Ping. I updated the uploader and waited.
I kept trying and trying, but it just wouldn’t work.
But did I let that stop me?
I went in to my current account and deleted the current devices I had connected… then ended up deleting the whole account anyway. I wasn’t sure if the reason why it wasn’t uploading before was because maybe it was an older system or one that was sponsored by Animas. So, I just thought it would be best to start over from scratch.
So, new account was created, and fingers were crossed, breath was held, and eyes were glued to my screen as I tried to upload once again. Even though I had already gone in and entered my serial numbers in, I still had to enter my username and password during the upload to link the account and devices together.
In the end, it all worked!!!
And I now have Dexcom and t:slim data all in one, happy place.
Over the past couple of weeks, I feel like I put myself into a cocoon in efforts to try to recenter myself and figure out what the heck is going on with me. I think for the most part, it’s just regular old diabetes-in-general burnout. And while my blog is for advocacy, it is also just a place to share my story and a place to get my own thoughts and feelings out of my head. So here’s my story of this past burnout. Honestly, I don’t know when it began. It just started as if it were a dark cloud creeping over my head… and I didn’t know it until the rain started.
Part of it was of my own fault though – Social media overload. And not just any old social media, Diabetes related social media. My facebook, my twitter, my instagram… all of my accounts specifically set up to connect with other diabetics as a support system… began to overwhelm me for some reason in a way that never has before. Groups where people were supportive but at the same time others were so very rude – a place that I had looked to for connectivity with people I thought would understand was also full of trolls living with the same condition, and the thought of how someone could live this life and bash another for the same life upset me on a level that I never knew existed in me. I let the words of those blanket my thoughts of how things must be and overshadowed the good that I knew was there, but had forgotten about.
The other part of it was just being tired of the testing, tired of the numbers, and tired of the math game. I had slowly gotten to a point where all I did was test, enter my BG, SWAG my carbs, and go. Then it became rarely testing, just entering swagged carbs, and delivering insulin. I had gotten down to testing maybe twice per day, down from my 6-10, almost in a way of ignoring my diabetes. Not that I didn’t think it was possible to control it – just that I had been too tired to try anymore. See, that’s the hardest part of living with this disease. There are no breaks. There are no vacations. There are no “free” days. It’s every day, 24/7, and we are supposed to somehow keep our sanity up through the ever-changing shifts in our needs to control this disease because it’s not as simple as test, take your meds, and watch your food. There is SO much more that goes on, and it all caught up with me over a period of time and I wanted to quit. But to quit is to give up not only on myself, but on my family. On those who love me. And that’s not right by them. The biggest problem is I’ve always felt as if this is my disease… it’s not theirs, so I’m not going to worry them or burden them with my issues or talk about it with them.. but the problem with that thinking is that you (I) are basically telling yourself (myself) that you don’t matter to your family… and you (I) do.
So, I’m slowly emerging from my burnout. I’m taking some things head-on again like testing more and starting to pre-bolus for my meals, and my meals are looked up and carbs calculated before I bolus instead of swagging them. I’m taking it all one step at a time. Break time is over. Recuperation time is here. I’ll get back up and running very soon, but one step at a time.
Yesterday, I posted a photo of a candle with it’s flame blown out and blue smoke trailing away. The photo was to represent me. I’m burnt out. Not just with diabetes – but with everything that surrounds it. The technology. The advocacy. The control. The everything.
I don’t have time to blog anymore – and if I did, I don’t know that I would. I feel as if I’ve become a broken record of sorts. Mostly because nothing is really going on to be blogged about, and if it did, I don’t have the mental energy to do so. And, for the past 5 1/2 years, this has been my platform for advocacy – but over the past year, I’ve recognized more and more that if some of the bigger bloggers are thinking that what they do is simply a drop in the bucket as to what needs to happen, then my efforts are simply a vapor, and simply not even needed.
And speaking of advocacy – I just don’t have the “u-rah” to do it any longer. I try to raise money for the JDRF and barely get over $200 without having to beg. Other things like call-to-actions simply go over my head because my head is filled with things I’m having to study for school and I don’t want to be someone who half-a$$ advocates simply because someone told me to or copy/pastes someone else’s prefilled response because I’m sure if any congressman or other elected official would read it, they’d know that what it was – and not that I would even be able to make sense of it even if they were to happen to call on me to get my point of view. I’d probably stand there looking like an idiot. I can’t pretend to know anything about law codes or dockets and that alone makes me feel dumb, uneducated, and unqualified to be an advocate for anything. I don’t have the time nor mental capacity to try to get more involved than I am. I’ve done the best I can for a while now, but I think even that not even enough to consider myself an “advocate”.
I’ve tried to get more involved to hopefully find new avenues of advocacy and support. I’m not much for Twitter, but I do have quite a few close friends on Facebook, and I’ve come to try to help moderate a couple of groups in hopes of trying to help others find an interactive means of support. But, as with all things technology and social media combined, it seems to foster more negativity than positivity at times. And it seems that no matter how much you try to help encourage others and possibly bridge the gap that is obviously between the two major aspects of this disease, there will always be differences – whether it’s between type 1 or type 2 or between being a person who lives with diabetes or being the parent/caregiver of one who is type 1 or type 2. There’s always fighting around it and I hate it because it always seems to come from the very people who say they support or mark their pictures with the Blue Circle and yet their actions clearly show that they don’t seem to realize that the purpose of it is to show the unity of all who live with diabetes under the same blue sky around the world. The color blue is not just for one type – it’s for all types. But it seems no matter how much I try to support or be the one to stand up for both types, the more I wonder if anything I ever do will ever make a difference. Seriously, at times, it’s as if Facebook should be renamed “Judgement” book. Not to say that it’s all negative, but I think the negativity of it has gotten the best of me.
And technology – I’ve always been SO interested in all of the technology that surrounds diabetes. All of the devices – the pumps, the meters, the CGM’s, apps, you name it. I’ve enjoyed learning about all of the new stuff on the market and trying them out and seeing the pros and cons of each of them while trying to see how one could fit one person better than the other and hopefully write well-informed posts about them…. but lately? I don’t really even care to see the new “exciting” thing. A few things have come on the market recently and I’m just not excited about them… and when that happens, it feels as if I’ve lost my flame.. my drive… my “me”.
I guess everything can be summed up to the fact that I want to be the biggest advocate there is – I want to shout it all from the roof tops and fix all the crap going on with health care and give all the diabetics access to everything they need and know everything about all of the devices and help them to find what would fit them and their lives so they wouldn’t have to worry about it and only focus on simply taking care of themselves, all while wearing a negativity-proof helmet and vest to fend off the nay-sayers. I have the compassion – I just don’t have the drive anymore. I feel as if I’ve put my heart into this so long and shouted my heartfelt excitement all for no reason at all because it’s never mattered really. My flame is not – and probably never has been – big enough and bright enough to make a difference, and I’m coming to terms with what seems to be that my method of what I thought was advocacy all of this time, simply isn’t.
So, I’m trying to make a decision as to what to do, and to make sure it’s the right thing to do. I’ll still support things going on -which currently my big thing that I am doing is the Big Blue Test. And maybe I need to redefine what I am in the diabetes world. Maybe I’m not a diabetes advocate, just a diabetes supporter… if there is a difference. I don’t know. What I do know is that I need time to think about things and maybe lay low for a while until I figure out what my place is. I don’t want to not be in the world of diabetes support, but if it’s time to move on, I need to figure that out.
It’s been almost a month since I posted. It’s crazy to think it’s been that long but at the same time, in my head, that was just last week. So much has been going on and I’ve basically just been concentrating on life than my blog, and I’m learning that that’s okay. I’ve been contemplating what to do about the situation… should I try to blog more? On a scheduled basis? But I’ve realized that I’m not a person who blogs based on schedules or requirements – I blog when I feel I have something to say or news to share. And, it may be that after 5 1/2 years that it may be time to slow down a bit. After all, I’m no person of authority or status to be sharing as if what I have to say or think is important – I just blog to blog. To get things out of my head. And I’m coming to grips with a lot of things lately in relation to diabetes and life, and diabetes blogging lately hasn’t made the top of the list…. it’s barely on the list, really.
Anyway, the updates I have are simply going to be bullet point style, because, honestly, there are a few topics that I’m just going to spit out randomly.
At the beginning of the month, I had a viral infection in my throat called “herpangina”. It’s the cousin to Hand, Foot, Mouth disease because both are caused by the same virus just different variations. It was painful, and I’m still – two weeks later – dealing with one big sore left in the back of my throat that’s taking a while to heal. The pain was awful in the beginning – and I could not eat anything that wasn’t a milkshake. Not even soup because it was too spicy (yes, soup!) and set me on fire. I sneezed at one point and thought my entire throat was going to come out. VERY very painful. I finally went to the doctor because I thought it may have been strep – but nope. He knew I was in a lot of pain, so he gave me a low-dose of prednisone to help the healing process. And, thankfully, the pain started to dull by that afternoon.
Speaking of prednisone, I now understand why doctors are cautious of giving diabetics steroids. Within 1 hour, my glucose readings went through the roof. But, the pain was easing, so I didn’t care. I raised my high threshold on my Dexcom, called my endo and asked how to handle the difference in BG’s (because, honestly, I didn’t feel like trying to troubleshoot on my own. I’m thankful to have a very good endo who has my back whenever I need him).
The prednisone gave me a new perspective on insulin resistance that was similar to how things were in my third trimester of my pregnancy, but without the worry of harming my unborn child. Seeing how I could go from a 1:8 carb ratio to one of 1:4 within 1 day and then have to remember that, yes, being off by just 2g of carb really COULD make a difference in my glucose later… yeah… it was nerve wracking, but so very cool at the same time. It was a learning experience, and one that made me feel even more compassion to those who deal with insulin resistance every day.
School is back in session, so my past weekend’s break was nice. And my BG’s were easier to control, so it made me realize just how stressed I’m staying while in school, and it makes graduating in May look that much better.
I finally have a treadmill. My husband promised we could get one for our anniversary, so we scouted and looked and finally came across one that was half-off and more within our budget range. It’s not a top-of-the-line gym model, but it will do for what we need, and for what we paid for it – I would have paid a 1-year gym membership, so we broke even there but the biggest advantage is that I can use it at home whenever I want/need to.
On the topic of my t:slim and the Accu-chek Ultraflex infusion sets – I have been doing so much better with those verses the Insets that I loved so dearly. I have no idea for the reason, all I know is that it works. So, even though I don’t’ have the cool colors to choose from, I’m happy because I have been able to use my t:slim without issue.
And, lastly, my eyes. I went for my checkup about the swelling/edema from the macroaneurysm earlier this year and all of the swelling and fluid has resolved and my vision has gone back to normal in that eye. I do have some “hard exudates” (collections of cholesterol/fat stuff from the fluid) left, but he said those would resolve on their own, but much slower. I do have a few places that need to be watched just from simply having diabetes for almost 26 years, so I’ll continue to see him every 6 months from now on.
That’s about it.. Wraps everything up. I’m not sure how often I’ll be posting until the end of this month but I’ll be sure to try to post more next month since, you know, it’s National Diabetes Awareness Month and all
Also, starting on the 20th (that’s this coming Monday), the Big Blue Test restarts the counter for this year’s Big Blue Test challenge. Click HERE to find out more about it!!!
My last post talked about how I dream that the t:clip would be.. and I still do. However, I took a big leap and simply ditched it…. and attached the Hip Clip directly to my t:slim.
It wasn’t an easy choice to make since I absolutely LOVE having the colors of the t:clips that I do and having the ability to mix and match them. The problem with affixing the clip directly to the pump is that you lose the ability to use the t:clips.. thus no fun colors. BUT, what I didn’t expect is how much it seems to lighten the pump… and makes it feel as if I’m not even wearing it.
It honestly makes the pump seem so much thinner.
I mean, yeah, it’s the same size it’s always been, but having mine stuck in the “otterbox” of cases it seems almost invigorating and new to see how thin it is… dare I say… sexy even. (Cause, yeah, pumps can TOTALLY be sexy… )
I haven’t had any issues with the clip seeming to come off or anything. The clip comes with 3M bonding tape pre-attached, and you can get more from the hardware store or walmart if needed. We happened to have some, so after I took the clip off of the plastic t:slider, I needed to re-tape… which involved Unisolve wipes to remove the old bits of tape from the Hip Clip before I could attach more to it. The problem with having it attached to the t:slider case was that the case had a matte-feeling finish on it, so the clip didn’t’ seem to want to stay permanently. You might could sand it before attaching it, but I didn’t take anymore time with it after I attached the Hip Clip directly to the pump. I love it. It feels more like the clip on the Animas Ping did… and I LOOOOVEEEDD how it clipped.
The only thing is that the clip doesn’t seem as tightly tensioned as the Ping on did, so if you’re very active with it, it *may* come unclipped… but the you wouldn’t have even needed to be slightly active with the t:clip or even bend over wrong and it would fall over or something. That’s what irritated me – it was SO floppy. The Hip Clip doesn’t really let it “flop”.
Right now, I’m in love. I haven’t really missed my t:clips, just the bit of color they provided.
I have been thankful to Tandem for coming out with the t:clip so soon after launching their t:slim pump and hearing the complaints of the t:case and t:slider being so bulky. While I’m sure some didn’t mind it, a lot did and they listened.. and I’m glad. I am the proud owner of 9 t:clips (I think?) and still want yet one more… the orange.
But one thing I wish they would fix is how far the clip sticks off of the case. I’ve written about this before, but the design of the clip adds bulk to the pump that I wish weren’t there. After all, one of the attractive features of the pump itself is just how slim it actually is.. and the t:clip takes away from that. Not just that, but it’s not particularly a sturdy clip.
I had an idea from something someone posted on a forum. They linked the Hip Clip and told what they did with it. I’m going to buy another one just for my Dexcom either way, but I bought one this week to try a little experiment. I took the t:case that came initially with the pump (basically the t:clip without the clip part), cleaned it, and stuck the Hip Clip to the back of it. The instructions are to leave it for 72 hours to strengthen the bond between it and the clip’s industrial tape.
I like the clip a lot, and I hope it sticks well. (If not, I’m going to try to glue it to the case) It was thin. It felt very similar to how my Animas pump felt… secure. Very secure.
It didn’t feel like the clip top was going to poke me (because, technically, it’s not there to do it…) It felt like the pump was thinner too.
The way the tape was placed on the clip from the factory allowed it to stick just a bit above the connection between the two pieces, allowing it to sit lower on the waistline was well.
My wish would be to see a revised t:clip with this type of clip. A thin, slide-on piece without that irritating belt wrap thing at the bottom. Even if they still offered the current one and maybe came up with a new name with this one. Maybe t:clip slim or t:clip2 or make this one the t:slider since technically it would slide onto a garment.
Please, Tandem.. Consider this as your design for the clips. It keeps the sleek, thinness of the pump, which is, after all, why you named it the t:slim, right?
Scott commented on my last blog post about the size difference that the Accu-chek Ultraflex seemed to have over the Unomedical Mio/Inset. So, I thought it would be a good opportunity to take a few photos and show you a couple of differences:
This one, obviously, is a side-by-side view of the Inset verses the Ultraflex. It’s actually about the same in height. One thing about the Ultraflex is that it clips in more securely than the Inset does, and I’m thinking it may be due to the way the Ultraflex also clips, or slides, into a middle “stub”, rather than just two thin clips in the middle. The only difference is that place where the cannula is has a bit more tape in front of it….
as you can see here. I’m not quite sure why this is, but it’s there. Not something I’m fond of, but it’s minor in my opinion, and something that could be cut if desired before inserting (something that can’t be done with the Inset).
One thing I was interested in seeing myself is just how different the cannula lengths are. Surely 6mm couldn’t’ be that much different from 9mm and having 8mm be only 1mm shorter than 9mm couldn’t make that much difference… or could it?
Apparently it does. It seems to fall smack-dab in the middle of the two lengths, which is just what I needed. Lord knows I’d hate to see how long the 10mm of the Accu-chek one would look!
This was rather interesting to me, so a big thank you to Scott for your comment!
It’s been almost 2 weeks since I started trying the Accu-Chek UltraFlex infusion set based on a recomendation from my distributor after some unexplained issues with pumping. I still can’t pinpoint what’s going on really, but the problems seem to be somewhat solved, somewhat not. But, I’m not going to bore you with that, and I’ll just get on with the infusion set itself.
The Accu-Chek UltraFlex is made for and distributed from Roche – the makers of the Accu-Chek Spirit and Combo insulin pumps as well as the Nano, Aviva, and Active meters (I’m sure there are others, but those are the one’s I remember). Also, they are the maker of my BELOVED FastClix lancet device. If there is ONE thing they know how to do, it’s make an awesome finger poker. And now, I’m beginning to feel the same of their infusion set… mainly because of the inserter.
There’s nothing really special about their infusion set when compared to others like the Inset or QuickSet. It is also a 90 degree Teflon cannula, so no bells and whistles there. Their connector is a bit different, but again, no real difference can be seen with that one either. So what’s the big deal?
Two things: There are 3 different cannula lengths available, something the other’s don’t offer, and the way the inserter works.
With most all of the other types of straight cannulas, you have an option of only 6mm depth and 9mm depth. While this may be okay for most, these give a slightly wider variance in that you can get a 6mm, 8mm, or 10 mm. For me, this has been perfect simply because with the Inset, I’ve always felt the 6 was too short while the 9 seemed to feel as if it were “brushing” nerves or muscle tissue (I know, gross). So far, I haven’t had that issue with the UltraFlex sets.
Next, is the inserter. This is where I honestly feel this device is truly set apart from the others. Rather than cocking the device and then having it press the infusion set in as it’s deployed, it simply spring-forced rapid-fires the infusion set into you. There’s no pressing or jarring of the spring action against the set. It does the work of the quick-jab like you’re taught to do when giving an injection without the pressing action of the other spring-loaded mechanisms. After it’s inserted, all you have to do is be sure to press the tape down and connect. I’ve used it a few times now and it has lessened the pain that I usually feel when using a new set.
Now, a third thing I would like to throw out there is the packaging. I do like that the way it is set up, in that the tubing is separate from the site itself, and there’s a cap that can be reused to cap over the needle to throw into the sharps bin. Everything else can be thrown away or put into recycling (I think).
I’ll miss my pretty pink Insets, but the tradeoff has been somewhat better control. Maybe I can color it with nail polish or something…
If you’d like to watch the video version of how to use the Accu-chek UltraLink and LinkAssist, I put one up on YouTube yesterday… or just watch here:
And just for kicks and giggles, here’s the insertion in slo-mo!