Long time, no blog… The big update.

I promise it has not been intentional to not be consistent or to be absent in blogging. Things were becoming increasingly busy near the end of my pregnancy trying to prepare for the baby, which proved to be a needed thing because I actually went into labor on Father’s Day weekend.

Yep. Totally unexpected. I even had an OB check-up the Thursday before and there was absolutely NO sign of her coming early. I knew my pelvic bone felt as if she had shifted down, but my OB said he didn’t think she had dropped, and that labor did not seem to be any time soon. Yeah, right. My body thought otherwise. Late Friday night / early Saturday morning, I started having contractions. Not bad, but stronger than normal, and only a few of them. I went off to bed with no problem other than the usual hip/pelvic pain that I had all throughout my pregnancy. Saturday morning, we went shopping for the weekend and for things for the next week (food, etc). Halfway through the shopping trip, the contractions were very strong, but not consistent. I thought maybe it was the pelvic pain from walking as long as I had been. Activity was not something I could do without major pain anyway, and this was just over the top. All I wanted to do was to go home and rest in my recliner and wait for the contractions to ease too – because, ya know.. they just had to be Braxton-Hicks since I was no where NEAR ready for labor right?? Ha. They stayed steady all.day.long. And into the night. By that evening, I told my husband we had better go just to get checked since the contractions were then becoming about 4-5 minutes apart.

After a 2 hour stay at the hospital (SUPER strong contractions, but no dilation… only a half centimeter!!), I was sent home with a cocktail shot in my hip to make me sleepy and to ease the pain (which made me super drunk and sleepy, but did NOTHING to ease my pain)… and some juice, crackers and peanut butter because my BG was dropping… which wasn’t usual.

All day Sunday (Father’s Day), I had contractions. I stayed in bed or in my recliner and simply kept a watch on my contractions, and took warm baths to help ease some of the pain. We went to bed that night and by 1am, I was crying and moaning through the contractions. Something HAD to be happening. We went in and I had dilated to maybe 1 cm.

O. M. G… Seriously?!? Yes… Seriously. And they were going to send me home again. I fought against it. By the end of that two hour wait, I was so uncomfortable. I couldn’t sit any longer. Walking helped, but not much. The contractions made the pelvic pain so much worse than I felt I could stand. Finally, the nurse came in once again an hour later to tell me my options and insisted that she check me. I also believe she tried to ‘help’ the dilation along because I had gone from that measly 1cm to 4cm. She called my OB and came back  and said “Congratulations, you just booked yourself a c-section at 7:30am!”

I cried. I was so ready to not be in pain, but was so unsure if she was ready since I had JUST made it to 37 weeks that morning.

My section was bumped to 9:30 due to an emergency one. By then, I had no idea how much further I had dilated, but there was no going back. I knew it. The pain was VERY intense, and I shook, cried, and moaned uncontrollably through contractions. I wish now that I had an idea of how far I had dilated just for curiosity’s sake.

Funny thing about c-sections, once they begin – it’s super fast and over before you know it. I was wheeled in and being prepped at 9 and by 9:35, I heard the cries of my little girl. And this time, I got to see her because they took the blue sheet down far enough for me to see as the doctor suctioned her and cut the cord.

And just like that, I had 2 kids. One, so happy to be a big brother, and the other just as happy, content and healthy as could be to be out of her cramped living space and out in the world. She was perfectly healthy with only a dip in BG after birth that was brought back up with some formula while I recovered with no NICU time.

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As far as my BG the whole time? I owe a HUGE thank you to the Nightscout team – both for the push to get Dexcom to release Share and for them to have the Pebble app be able to get the info from my Share account so that I could be monitored VERY closely with just a glance by my husband at his watch, and my Dexcom and phone be tucked away in his pocket. Oh, and the medical staff was super impressed ( nurse: “hey, what’s her BG?” husband: “136” OB while cutting me open: “awesome!”… yeah… that’s pretty darn awesome!!)

Third and Twice

For most of the pregnancy calendars I’ve looked at, this week ( number 27) marks the beginning of my third trimester… or either the last week of the second. I’m going with the first of the third because of simple math reasons (40/3=13.3, so TECHNICALLY 26w6d would be the shifting point). Either way, I’m now in what they call “the home stretch” and I’m very happy to be.

Don’t get me wrong, the ability to be pregnant and feel a little one moving around inside of you is pretty darn awesome. From her kicks and jabs to just simply rolling around, it all amazes me and makes me so excited to imagine what she looks like. But there have been a lot of differences with this one – mostly I’ve had a lot more pain throughout this pregnancy, and I’m ready for it to be over.

One thing that is not very different and knew would be coming on full force sometime soon was the lovely insulin resistance. It’s like I was telling a lady friend the other day who was talking about how she hates the monthly resistance that comes before the week of her period. Pregnancy is the same way, except it’s a cycle that lasts 9 months. The third trimester is like the third week of that month where insulin resistance hits and makes no sense but you have to roll with it – except it lasts for about 10 or so weeks and increases with vengeance. I think I made adjustments two or three times last week. And I’m already very close to being at twice the insulin intake that I was pre-pregnancy. I have to remind myself that I’m not doing anything wrong and that I’m not a bad or irresponsible diabetic – I just need more insulin. When I have to bolus and what would normally have been only 3 units, tops, is now close to 7, I have to mentally keep myself from feeling bad and just realize that it is what it is because of my current state of pregnancy.

Looking at the overall picture though, I’m doing very well with this pregnancy just as I did with my first, and that’s what I’m most thankful for. I’ve been bumped up to 2-week visits now and will start that lovely Fetal NST (non-stress testing) visits twice-weekly when I’m 30 weeks along. Yay. 🙂

 

Getting Closer To A Decision

It’s no secret that I am someone who can’t seem to make up their mind when it comes to diabetes devices. Granted, I have (according to my Countdown app) 19 more months until my current t:slim pump warranty expires, so I do have some time to mull over this – which is a good thing. I don’t think that choosing a pump should be a quick decision for anyone, nor should it be one that a doctor should make for you – one should have the time to research all available options and to do as much research as possible. You are sorta “stuck” with the decision you make for a while – at least 4 years, 5 years for some, if insurance paid for it, so it needs to be a good one. And it should be one that you listen to your gut about as well.

I do have a Medtronic pump and while I have no issues with the pump itself in how it fits into my life – I do have issues with their CGM system and prefer Dexcom whole-heartedly over it. I’m not saying it’s a bad system, just that it doesn’t work for everyone and I’m one of those people. Which brings me to my next point.

Seeing as how they (Medtronic) will probably never answer the clicking of my ruby slippers and wishful thinking and offer a pump that also integrates with Dexcom, I’ll always have two separate data systems to look at when viewing my data. My endocrinologist works very closely with me and allows me to make tweaks as I see that they need to be done. He knows that I fully understand how my pumps work and also knows that I have taken time to study how my body works. And until this pregnancy, I never really cared about the data being separate. Now? It’s a huge deal to me. Maybe I’m losing my touch or I just don’t have the time to upload and analyze like I did before, but the separated systems irritated me to the point that I stopped making my own tweaks. And while I absolutely LOVE my endo to pieces, his office is busier and he doesn’t always have the time to get back with me.

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So, I’ve made a big part of my decision. Any system that I use HAS to upload to Diasend for Dexcom integrated reports. I don’t care whether the Dexcom is integrated into a pump at this point because I have the Dexcom Share receiver and it fits me and my needs better than having it integrated into a pump would.

I also know how my particular insurance works, so I also know that pumps that are partly disposable (ie, the Snap by Asante and the Omnipod by Insulet) will not be choices in my line-up due to on-going costs. I totally get that up-front, it’s cheaper, but I’d rather pay more upfront and have lower monthly costs than commit to a pump that I may not be able to afford supplies for. These pumps are good pumps as well, but for me, it’s a financial factor that’s swaying me.

And, to go back to Medtronic’s system for just a minute, cost is a factor there too. While I could just go back and order a Revel pump still and use the Dexcom separate – why would I want to get a pump that I know I’m not going to use it for it’s full functionality? It’s sort of a waste of money if you ask me, and not an option I can bring myself to choose.

So, that leaves me with either:

  • Tandem again (which hopefully their new t:slim G4 will be available and the upgrades they make to other things in the pump – like reverse correction – will make it better, though I’m sort of leery about going back with them after all of the problems I’ve had with that particular pump),
  • Accu-check – though I’m not a fan of having to use their dedicated remote for bolus calculations since it’s not built into the pump, and you have to use the integrated meter to even use the bolus calculator (you can’t input a manual reading to base it off of like you can with other systems), or
  • Animas – which seems to be a strong contender as I do like their Ping and I’ve honestly not had any issues with the pump or customer service from them, and it also works with Diasend. Plus, the Ping has a remote to bolus with, with FULL calculations, not just an “easy-bolus” of a pre-determined amount.

In short, I’ve made a decision really to stick to Dexcom, Diasend, and one of those three pumps. It’s just deciding which one of those now that I’m left to make the choice between, which I’m sure I’ll continue to think and weigh options between them over the next few..okay, several… months.

One Year Since…

Today marks one year since possibly the scariest day I’ve ever faced in my life of living with diabetes. It has been an emotional week leading up to it and I’m sure I may catch myself having moments today as well. As I look back, I remember and feel the fear and the feeling of failure that I faced that day just as raw as ever.

It was the day I woke up and couldn’t see anything but light and darkness out of my left eye.

Since then, I have gone through dealing with three different diagnosis’, with the final one being a macro aneurysm that dissipated before the vessel could burst. The fluid from the swelling was what caused the temporary vision loss, and without it, I would have never known it even happened. The final diagnosis was both a blessing and a wake-up call. I was blessed in that it didn’t burst, it was a wake-up call that I needed to (1) find a new doctor and (2) stop getting so stressed about everything and to be thankful for everything.

image (3)I’ve been one to try to be positive about things in life, especially my diabetes. The Serenity Prayer says it best – “God, grant me the serenity to accept the things I cannot change…”. I cannot change the fact that I have diabetes. I cannot change the fact that after 26 years, there is a much higher risk of developing complications. I cannot go back in time and change how horribly I took care of myself for so many years – especially those teen rebellion years. BUT, the next part? “…Courage to change the things I can…” – Yes, there are things I can change. I can continually do my best to take the best care I can of myself. And lastly, “…and Wisdom to know the difference”… We have to know that there are things we can and things we can’t change. There are sometimes things that no matter how much we try, will never make the situation better. We have to recognize them and learn to let it go.

Not too long ago, a post I had written was syndicated to DiabetesDaily about if I were to be cured, what would I miss? A few commenters on their Facebook page called me crazy for even thinking I’d miss anything about diabetes. I don’t blame them – if I hated diabetes as much as some do, I’d think the article was pure craziness. But you know, after all of this time, it’s one of those things I’ve had to come to accept – I cannot change that I do have diabetes, so while I do, I have to embrace it and try to find the positives from it. Is it hard? Yes. Do I have moments of utter anger and resentment for having this disease that I know will progressively cause damage to my body? Yes.  I still get angry. I still get upset. I still cry when no one is watching because I’ve taken all I can take for the time being and I need a break. But you know what? I also realize that I cannot stay in that mindset. I have to have it and move on because I cannot change the fact that I have diabetes.

What I can change, though, is my attitude toward it. And I can continually work on knowing when to just let go and move on.

It’s been a rough year, to say the least, but it’s been one filled with blessings. I can see, my eyes are healthy again, and most of all – the thing I thought would no longer be possible for me – I’m carrying the most precious gift God could have ever blessed me with, and we’ve continued to be healthy throughout the pregnancy.

Hope, Courage, Prayer, and Faith. It’s what it takes.

 

(I turn to music for a lot of things. This song helped me through some pretty dark times. )

Coordinating Devices with PumpPeelz

One little thing I like to do is design graphics. I piddle with it, mostly, so it’s not a big thing, but it gets my creative juices flowing and takes my mind off of other things that may be stressing me out.

So, I wanted to make a design to get a custom PumpPeelz made so that my Dexcom and Medtronic pump matched and looked cute. Crazy, I know, but that little bit of color and art makes having the devices not so mundane. So, I set out to make a design using a blank canvas in Photoshop and some “brushes” (some of them are more like stamps, like the ones I used). I also used color inspiration from my niece’s favorite show, Strawberry Shortcake. My favorite character is Cherry Jam because, well, she sings and her colors are pink (like, fuchsia pink), a purpley-tinged pink, white and purple. This is where I LOVE Adobe Color because I can pull the exact colors from the photo and use them in my design work in Photoshop. (okay, okay, enough about my geekiness…)

Scott was able to take my image that I sent him:

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And with it, he was able to make my matching skins:

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I love them.  And the purple almost matches the color of the pump too. And, since I really don’t like the pink that the Medtronic pumps come in (someone likened it to a naked mole rat once, so now that’s all I see with it!! hahaha!), this gives me a perfect mix of purple AND pink… a pink that I like.

Is this post about diabetes? Not necessarily. But I do believe that things that make us happy and creative around diabetes helps us to do better and be more encouraged to take better control of ourselves. And if a silly pump skin or Dexcom skin helps do that and also gives me a means to display my artwork, then hey, it’s all good. 🙂

So go and get creative. If we have to use these things to help us be healthy, why not get creative with them? No use in being drab all of the time, I say. (Unless that’s your thing… if so, go for it.)

 

If you like this design too and would like to have one like it, feel free to email me and I can let Scott know that you would like to purchase one. I don’t charge for the designs, so it would be the cost of a custom designed skin from PumpPeelz.

Conflicted

I am one of MANY people who choose to use the Medtronic pump system with the the Dexcom CGM system. Since my endo took me off of my t:slim, the biggest thing I have been irritated by is how I cannot get all of my information into one report. I was finally SO happy to have that ability with Diasend for the t:slim and the Dexcom, and now I don’t. I know Medtronic has their own CGM system and I do have the 530G that will work with the Enlite sensors, but I had a bad run of luck (about 3 months worth) with it when I used it last year and I am hesitant to go down that path again, especially right now.

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Plus, now that Dexcom has Share built into the receiver, it has been SUCH a valuable tool for me and my family. I even contemplated using my old, out of warranty Animas Ping system so I could have all of my data in one place, but after one day of all of the irritating quick-scrolling and constantly missing my intended mark, I got irritated and used my Medtronic pump again. Not to mention, logging everything into the Medtronic through the Capture option so I could keep complete records was just irritating in itself (not that anyone else should have to do that, but I was just for my own sanity’s sake).

It really baffles me how Medtronic, being the big business that it is, and knowing that not everyone can wear their sensor, wouldn’t work with Dexcom to have a Dexcom version of their pump. Of course, I don’t know if maybe the feeling is mutual between companies and they just don’t want to be friends or what, but it would seem that if a company wanted to reach a HUGE customer base for their combination product, it would offer options that would fit almost everyone’s needs.

Anyway, that’s where I am right now. I have had a good experience over the past month and a half with my Medtronic pump and it’s made handling diabetes with pregnancy since switching a lot easier. I just wish I could have my reports all in one place, instead of two. It helps me make better decisions about my care. Sort of like what having access to Medtronic Pro reports would probably do too, but that’s another beef I have with them ( I mean, seriously?? Why can’t we have access to the more comprehensive stuff if our endo’s trust our judgement? And why have TWO systems anyway – other companies don’t [I don’t think, anyway].)

Bottom line is I know Dexcom works very well for me. I know that I like the Medtronic pump. I just want my world to be perfect and have the option of having those two combined.

*clicking my ruby slippers*

Until The End… At Least

Yesterday, I had my monthly appointment with my endocrinologist. I always look forward to my meetings with him – he’s always on top of everything to do with my diabetes, knows what a data nerd I am, and he fully trusts my decisions about my diabetes as much as I trust him to help me make decisions when I can’t.

He also knows that before my pregnancy, I switched pumps within my arsenal pretty regularly. He never had a problem with it. We even laughed about the amount of “backups” I have, even though all but one are out of warranty. When I received the second t:slim replacement in April of 2013 and started using it in January/February of 2014 after the cartridge recall and continued with it for a year until it was replaced earlier this month, he was impressed that I stayed with one that long. Last week, when I finally had enough of the craziness from my third replacement, he was willing to try to help because up until then, he (and I) was under the impression that I had found “the pump”.

So, when I went in yesterday, I told them about going to my Minimed once again (for documentation purposes), but this time I showed him the Dexcom reports between the two. He was floored just as much as I had been. Just as I had thought all along, he would expect to see that if I had switched insulin brands, not simply insulin pumps – because essentially they all should work relatively the same at delivering the set amounts of insulin. But the difference I had shown worried him. He told me not to use t:slim for the remainder of my pregnancy, and to stick to Medtronic. I had told him my husband and I discussed it and we had already planned to do that anyway, but hearing that from him validated it. And, in all honesty, it shocked me. He’s always been one to trust what decisions I make and go along with what I want to try, with the exception of ONCE telling me “no” to a medication I wanted to try, and this time I had the same reaction. He had stepped in and told me not to use a pump. Part of me is in shock, but partly not. It once again reassures me that he’s allows me to do what I want with my diabetes management, as long as it is within reason, and staying on a pump that would potentially cause harm would not be within reason, and he stepped in.

I will have add to all of this, though, that I did receive a call from Tandem at 10pm about replacing my t:slim once again. Since it is in warranty, that’s what I expect them to do. I went through all of the common questions they ask for record purposes, and the representative documented my answers. The replacement t:slim will be here next week, however both following doctors orders and for my own sanity, I will not be using it until the end of my pregnancy – or a bit later once insulin needs become somewhat predictable again. I’ll already lose some of my brain cells and energy to taking care of a newborn, and I won’t want to add switching pumps into the mix. He documented also that I wouldn’t be using the replacement until after August/September, so I wouldn’t be able to give feedback until then – and to my surprise, he didn’t try to pressure me into trying it any earlier. That made me feel very comfortable. I am glad that they reached out and were willing to replace the t:slim without hassle this time. I’ve only had a couple of sub-par experiences with their tech support, and the rest of the time it’s been good, so it does help to know that they are listening.

So, out of everything that’s happened this month, I am thankful to have an awesome Endo that I fully trust and that I know truly cares, and to know that Tandem does care – even at 10pm at night.

Studying and Tuning

Usually, about once a month, I study my Dexcom trends and make minor adjustments here and there in my insulin needs (with permission from my endocrinologist, of course). This ritual then becomes a weekly thing during pregnancy, and this time is no different. And, later in the pregnancy, I tend to do this every couple of days or so due to all of the increased resistance and stuff.

Since I switched back to my Medtronic pump after issues with the t:slim last week, I wanted to get a good few days of data before making any changes since typically you do have to make some adjustments between insulin pumps. Not all of them deliver in the same manner (though relatively the same, but juuuuuuust enough to possibly need minor changes in insulin dosing). Here’s what I mean:

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6 days on the t:slim I had been using during the first part of my pregnancy…
6 days on the *replacement* tslim... NO changes in rates as they're the same brand of pump so it shouldn't have made a difference...
6 days on the *replacement* tslim… NO changes in rates as they’re the same brand of pump so it shouldn’t have made a difference…
...and the last 6 days since being on MedT with practically the same rates.
…and the last 6 days since being on MedT with practically the same rates.

If you compare the first and the last picture, you can see that there’s not entirely too much difference, and the average BG between the two was only a few mg/dL off from each other. The replacement, however, was whacko.

Either way, I’m doing a lot better on the MedT and will probably stay on it. And since I have made that decision, it’s time to get down to fine tuning things. I’m dropping every night around midnight, and it’s taking longer to treat them, thus I over treat and go high. BUT, the thing is, I’ve not corrected those highs. I’ve been trending back down on my own. So that tells me I have some work to do between supper, bedtime, and overnight basals and other factors.

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I usually look at my trends on the computer and try to identify things. If I think I see something or have a hunch, I’ll print out the Daily Trends report so that I can see the days individually and not as an average, and I’ll write my basal rates below it. This time (for example), I noticed that I dropped an average of 57mg/dL from my highest average to my evened out number when I wake up, which, ironically, is close to my insulin sensitivity factor (55mg/dL currently). So, I took the 1u and divided it by the number of hours it had been dropping  before leveling out, which was 7hours, and it came to 0.14, which I interpret that to be a needed basal rate change of 0.15u per hour less than what I have it set at now.  It all may not be exactly right, as most of what I think I’ve figured out is simply a hunch that I try out and see if it works. If not, I have record of my information pre-changes and I go switch everything back to what I had before.

This the stuff that goes through my head while I’m examining my data. This is why having as much of my data in one place is as crucial as air to me, especially while pregnant. It’s such a pain in the butt to have to look at multiple reports and have to spend more time organizing it than actually analyzing it. So, I’ve also resolved to leave my beloved Verio IQ and use the Contour Next Link meter that works with the pump, so that all of my data from the pump and meter at least are in the same place. That, and since using the CNL meter, my Dexcom data more closely matches it whereas it hardly ever matched my Verio. I’ve done a lot of research over the past couple of days, and it seems that maybe the CNL meter is a bit more accurate than the Verio, and with the Dexcom using the more accurate 505 software, maybe the two are just meant to be… Or I could just be completely off my rocker. 😉

So, I’m off to my endo tomorrow for my monthly checkup and to share my observations and changes with him.

(What I do and write here are in no way medical advice that you should ever take as such. I have worked very closely with my endocrinologist over the years and he has helped me learn how to do these things. If you want to learn how to manage and fine tune, please speak with your health care professional, as I am not one.)

 

Changes At The Half-Way

Typically, when one such as myself who is a device hoarder and who likes change becomes in a medical state where circumstances would favor more stable device use and more concentration on what is actually going on, one would stick to those devices no matter what and create a harmonious data record flow throughout the medical state.

My said state is, of course, pregnancy. A highly regulated and controlled medical state in those who are diabetic because both high blood sugars and wide variations in blood sugar control can cause damage to the developing baby. So, when I found out about this one, I resolved to stay on my t:slim pump, Dexcom CGM and Verio IQ meter – both because I was happy with my t:slim finally after having used it for almost a year without issue and for the sake of keeping consistent records. I had no concrete reason to switch back to another pump other than for my own sanity as I still didn’t 100% have faith in it. In all honestly, even though I had used it for the entire year without issues, I still -in the back of my mind- wondered when the issues would arise again. I held my breath with each cartridge change and said a prayer that it would work just fine. And it did… until earlier this month.

Granted, I know that being in the second trimester that insulin resistance would start to kick in, but there was a HUGE difference in my control after I had received my last replacement from Tandem on the 6th of this month. I was right back to fighting wild, crazy numbers from all ends of the spectrum without any rhyme or reason to them – and the only thing that had changed was the pump. And while I could call Tandem about it and have them replace my pump again, I just don’t have the mental energy to go through it again when even this last time was a bit challenging to get it replaced because the error I was getting was not a known problem and the pump had passed all other safety tests. I’m sure for other people, Tandem is a great company. I think they have a good product on their hands, but for some reason I just seem to not have luck with it for long.

Last week, when I had finally hit my breaking point – literally, I was sobbing Wednesday while contacting my Endo and letting him know I would be faxing records to him for help – I decided to go ahead and use my Medtronic pump. Crazy thing is, just for my own security of mind, I had just had it switched out from the 5 series (the 180u pump) for the 7 series (300u pump) to have as a “just in case” for the end of the pregnancy when insulin needs were going to be much higher. One of the issues with the t:slim seemed to be when I filled it up to 280, it would screw with the load sequence – thus the reason I had it replaced. Within a day, my BG’s became predictable again. I could bolus without skyrocketing and plummeting later – as if the insulin wasn’t being delivered. I could pre-bolus on a predictable schedule before eating again. And while I don’t like that now I can’t upload my pump and meter together so all of my data is messed up, I’m more at ease about my glucose levels overall. All from switching a pump.

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Saturday, I put my t:slim into sleep mode and packed it up and away. I do not plan to use it for the rest of my pregnancy, and even after that, I’m not sure if I’ll use it again. I’m absolutely torn about it because it was the first pump since my Disetronic way back in the day that I truly loved to use. But it’s like I’ve heard many other veteran pumpers say – I don’t care how fancy you make your pump, I just want it to deliver my insulin and work like it should. Especially right now.

Of course, this all is not to say you shouldn’t get the t:slim if you want it – there have been plenty of people who have used this pump since it came out without issue. I seem to be one of the lucky few who has had problems with it. Not every pump works for everyone, and you can’t go off of one person’s experience to assume what yours will be. 

And I know this is already a long post, but I want to give a shout-out to my Medtronic rep if he’s reading. He’s been so supportive of me through the past 4 years – no matter how many times I would switch pumps and go back to my Medtronic one, he was always there to help with whatever I needed. I can honestly say that I have never had a rep from any company be as good to me as he has, and I really appreciate that. So, a huge “Thank you” to Travis, especially this time for taking out a few moments on your day off (and on your way hunting, no less!!) to bring me a few sets that I needed until my order comes – you’re an awesome guy.