Thank goodness for bread baskets. Because I’d ordered the steak…
There was a time when the phrase “smart pump” did not exist in the diabetes world. There was basically one pump brand on the market and it did one thing: deliver insulin. But if you look at the pumps that have entered the market in the last five years, you’ll see all sorts of “smart” features. Things like a Bolus Wizard, carb count catalogues, insulin-on-board calculators, and tagging features galore. And I love that we have all of these options! It’s just that…I never use them.
Ok not never. When I test on the Freestyle meter built in to my OmniPod, I do use that BG as the suggestion for my bolus (plus a carb count). But let’s say I don’t do a finger stick and I’m bolusing on the fly based on my CGM data. Then I don’t use the calculator features. The reason being is that I usually feel like I’m juggling too many factors for the suggestion to be helpful: yes my BG is 180 and I’m having 35 grams of carbs but what if I worked out? What if I was low just an hour before? What if it’s going to be a super lazy and sedentary Sunday in front of a Walking Dead marathon and I’m so grossed out by the zombie killing that I can’t finish my late breakfast (not that this has ever happened….except that it always happens)? When I factor in all of these variables, I’m convinced that I should just determine the bolus and forget about the calculators on my pump -I’m going to change them anyways, right?
Well, maybe. The problem is that skipping this step allows me to gloss over the whole process entirely. Even if I decide to change my bolus later, having to enter in a BG, a carb count, and confirm that suggested dose will push me to truly evaluate all of these items, rather than scan the dinner table and punch in a mostly-arbitrary “two units now more later if need ‘em” type of bolus. Which is not using the features to my advantage. I’m missing a lot by not taking those crucial few extra seconds to actually think through what I’m doing (what a concept, eh?!).
Features on smart pumps were built around customer needs, and they only work if you use them. And although, as the saying goes, even a broken clock is right twice a day, having a little strategy and calculation on board is better than having absolutely none. Which is where we all tend to trend when we’re in a hurry or busy. I need to let the smart features on my pump offer a little guidance as I bulldoze through life these days. Hey, they might actually turn out to be helpful!
Just like that. Just when I had started to worry that maybe all the hard work wasn’t paying off. That I was spinning my wheels. That I was going to Crazy Town, correcting 150s and 152s and counting out those exact 15 carbs for lows and trying every app in existence to get my carb counts better and tweaking my basals and suffering the lows because of it. Just when I thought “I can’t try any harder…” there it was. The elusive, mystical, fantastic number I’d been looking for:
It took three months (and six Southeast Asian countries) to go from a 6.3% to an 8.1%. It took almost one full year (11 months and one week) to get back under 7%. Finally.
One cool thing about my new endo’s office is that they do chart notes electronically and hand them to you right before you walk out the door from your visit with the doctor (I am sure these are not her complete notes, but they cover what you talked about with her and items for follow up, which is cool). Being a new patient, I had provided my last several chart notes from visits with my San Diego endo, and those included my last A1c that came in a at a disappointing 7.2%. And because “controlled diabetes” is defined by having an A1c under 7%, I saw this at the bottom of my chart:
Yikes. It’s hard to see that. It’s hard to see that when it comes to cold, hard numbers, I’m in that category. Uncontrolled. Like I’m running wild through the forest yelling “Can’t NOBODY hold down this diabetes! It’s uncontrolled! Yeeee haaaaaaaw!”
Except that I’m not. Quite the opposite in fact. I’m busy carb counting. And bolusing. And correcting. And basal tweaking. And doing everything in my power to get that changed to “controlled Type 1″ again. I have confidence I’m almost there- back under 7% and feeling like myself again. I totally get why they have to put that on there. It’s diagnostic criteria and it’s also true: by ADA standards I’m not considered in control if you looked at my last A1c. But it’s still tough to see right there on the chart, defining where I stand right now.
As a side note, how hilarious is it to see “You were diagnosed with Type 1…” like it happened yesterday and not 21 years ago? No wonder I’ve been feeling funny…must be my recent diagnosis of the ‘betes!
She was awesome. She was about 10 years older than I am, but she’d spent those 10 years in med school and residency. We made some small talk – she’s into cycling too and loves living near the mountains. She has two kids of her own and knows how it is to be too busy for your own good sometimes. She listened thoughtfully to what I had to say, and let me explain everything that I needed in this relationship if we decided to move forward. She agreed to my expectations, and did me one better by recommending some others that could be part of the team. Yep, I think we’re gonna get along just fine.
If the last paragraph sounds like a first date, that’s because that’s how it feels when you meet a new doctor. I had an appointment with my new endo on Friday, and I’m stoked to say that it went incredibly well. I had been nervous before hand because when I had called to make the appointment the nurse wasn’t sure if I should bring my CGM because she didn’t know what that was (OMG!). But not only did this doctor know what CGM was, she downloaded it and my pump and used the reports to show me that I really am going low too often in the early morning hours, among other “trouble spots”. She then suggested I make some tiny tweaks in my basal rates and then she picked up my OmniPod controller right then and there and casually said “do you mind if I just do that right now?” Hell yeah.
No mam, I don’t mind, and in fact I was quite impressed. Working in the industry that I do, I am very aware of the fact that while I’m an expert in the product that I sell, the docs and CDEs who see us have to know how to use ALL of the pumps and CGM systems on the market – and that’s a lot of buttons/steps/report downloads/software/alarms to remember how to use. She flipped through my controller in two seconds and had those basals adjusted before I could say “euglycemia.” Amazing.
We also talked about the fact that Jacob and I want to start a family in the not-too-distant future and she didn’t bat an eye. In fact, she looked right at me and said “I have every ounce of confidence that you can and will have a healthy baby one day.” She did encourage me to get my A1c down in the low sixes before we started that whole project, but she also applauded me for my efforts up to that point and encouraged me to keep up the good work, all the while acknowledging the fact that this IS truly is hard work. She totally gets it. Plus, she sent over my Humalog prescription to my pharmacy before I even left the room, and got me scheduled with an eye doc for my annual dilated exam. How’s that for efficiency?
It is such a relief to find a great endocrinologist right off the bat. It’s something I had been putting off until we were truly settled here in Oregon, and having this nailed down is a major part of me feeling like I belong here. I saw my previous endo for 12 years. I’ve cried in his office over breakups, and boot legged sample insulin out of his office when I didn’t have insurance. We have history, man.
But I can already tell that this new doctor is the right fit for the next chapter of my life – one that involves some major milestones. And I couldn’t be happier about finding the right person for that role!
One fact about living with diabetes that never ceases to amaze me is that if I wasn’t on top of my sh*&, I’d be left for dead on a corner somewhere by America’s healthcare “system.”
Ok, ok, I’m being a little dramatic. But after the hours I’ve wasted the past several weeks trying to get my pump supplies, that’s how I’m feeling! What happened to put me in such a foul mood today? Well, let me begin at the beginning:
Move to Oregon, continue to see San Diego doctor on trips home for a while.
Get new job, decide to stay in Oregon, commit to getting new endo.
Get new insurance with new job.
Endo doesn’t have appointment available for several weeks, get one for March 7th.
Pump supplies starting to run out. Normal auto-shipment not delivered as usual.
Call pump company…stay one hold for approximately 47 hours. Get told they don’t accept my new job’s insurance. Get referred to a 3rd party distributor.
Call 3rd party distributor. “We’re working with your doctor to get your prescription on file with us. This can take a few business days.” Hhhm. Ok.
Call pump company, explain that I would have liked a call about the fact that I’ve been referred out to a distributor sooner because now I’m almost out of supplies. Pump company overnights some extras (thank god).
Call distributor. “We can’t reach your doctor.” I ask which doctor? “Your doctor in Portland.” I’m a new patient there, I’m probably not in their system. Can you call my old doctor? “He won’t sign off because you’re no longer a patient of his.” Ok, I’ll call him.
Call old doctor. They are happy to sign off on pump supplies, didn’t realize I couldn’t get in with the new doc until March 7th. Ask distributor to please fax over order. I call distributor. He says he faxes.
ONE WEEK GOES BY. No pump supplies. Down to last three days worth. Call distributor. “We faxed your doctor three times, didn’t hear anything back.” I ask if they were going to call me to help reach the doctor or to let me know that YOU WON’T BE GETTING ANY PUMP SUPPLIES AT ALL? “No mam, we’re working with your doctor to fulfill your order. This can take 3-5 business days.” Ok. It’s been two weeks. “Sorry.”
I call old doctor. Say someone faxed and didn’t hear anything. Nurse says there are no faxes, she’s looking at the machine right now. Ok. I get an email address.
Call distributor. Give him email address. He gets Rx in five minutes for pump supplies. I ask if these are shipping out today. “No mam. That will take about three to five business days to get those out to you.” I have strong desire to reach through the phone a grab him by the collar and demand he rent a car and DRIVE ME MY SUPPLIES THAT I’M NOW COMPLETELY OUT OF THANKS TO YOU FOR ABSOLUTELY NOTHING.
The scary thing is that this happens all the time. And I’m one of the lucky ones! I have back-up supplies, and back-up friends with supplies if I ever really needed something. But what if I was a little old lady living by myself in some remote corner of the world? What if I didn’t have access to back-up insulin? What if I hadn’t tried to call the distributor to check? What if I hadn’t called my old doctor to ask him to sign the order, and then verify the fax wasn’t going through? The what ifs are endless and have very real consequences.
It is a scary world out there when it comes to your own health, especially with diabetes. One thing that has always remained true for me is that I must be the captain of my own ship to be successful with this disease. Otherwise, it could be three to five business days before anything happens. And we all know what that really means!
I’ve been on a mission for the last few months. It’s called Operation Get My Freaking A1c Back Down After Going Up Over a Full Percentage Point While Traveling in Asia a Year Ago (might need to get an abbreviation for this project name…). After struggling much more than I anticipated in the past year with all of our transitions (travel, wedding, new city, new job, you know EVERYTHING), I feel like I am finally actually making some headway in getting my numbers down. But the worst part about tightening up your control is the inevitable fact that more lows come along with it.
As I get more aggressive with preventing and treating highs, the price I pay for it is more lows. In just the past week, as I’ve been tweaking my overnight basals, I’ve woken up between 3am and 5am FIVE TIMES with some serious lows. I’ve since worked out (most of) the kinks on the basals, but it was a rough week of poor sleep and “low hangovers” the next day. I’ve also had some afternoon problems with lows as I try to be more accurate with dosing for lunch. I recently downloaded my CGM to look for any patterns and there they were, all those lows, called out in bright red:
If you have explored your CGM download before, you will know that the thermograph at the bottom of the patterns shows the frequency, duration, and intensity of the lows (the brighter and larger the red section, the worse and more often they happen). This is just seven days worth of BGs and you can really see where I’m struggling. I still go a bit high overnight, and then correct that with boluses or basals, but pay the price early morning with a low.
Tightening control for me has always meant a consequence of more lows. Even with a CGM you can’t prevent the fact that you will have some dips – you’re correcting numbers you might not have in the past, stacking doses at times, and experimenting with basals. The goal for me here is to get the overall A1c down, and then troubleshoot the areas where I’m still having challenges. It’s not easy work, but it’s necessary. Which means I’ve kept the GU packs stocked and the can of cake frosting where I can grab it quickly.
Do you all find that when you really tighten up your control that the consequence is more lows? And if so, how do you deal with it? Do you work to bring everything down and then fix the problem areas? Or aim for a higher goal at first and slowly lower it?
I’ve been working in the diabetes industry for seven years now at two different companies that both make innovative medications or devices for people with diabetes. And just like the products themselves, the people they make them for are also innovative. As in, they take the instructions for use with these products and basically throw them out the window. Because people with diabetes have been improvising and adjusting for as long as this disease has been around. And that’s because when you’re struggling to make diabetes fit in to your busy life, you inevitably create work arounds.
The toughest part about being a person with diabetes and working in this industry is keeping my words on-label. On-label refers to the package or medication labeling that a product has. When the FDA approves a product or med, they approve it based on the data the company has from their clinical trials. If during a clinical trial, for example, the only people that took an experimental insulin were men over 40 and they all only injected the insulin in their abdomens, then the final package labeling might say something like “this product is intended for the treatment of diabetes in men over the age of 40 and is only proven to be effective when injected into the abdomen” regardless of whether the insulin works in all ages, genders, and injection sites.
Basically, if you didn’t do it in the clinical trial, the FDA won’t put it on the package. And I run in to a challenge with this all the time. Since I also wear a CGM I get questions such as “well how long do those sensors REALLY last?” and “do you wear your sensor on your arm?” As a patient, I’d love to tell you all about how your diabetes gear can vary. As a rep though, I will tell you that the sensors are FDA-approved for use for seven days and approved to be worn in the abdomen. Period. End of story. Because if I don’t stick to the script, the FDA can fine my company big bucks for “off-label” marketing. It’s a fine line as a rep who is also a patient, because my inclination is to always speak from the patient perspective. But this is what the FDA requires and they do this so that companies don’t go out there and say whatever they want to sell products or medications, even if it’s a stretch of the truth. It’s a law built to keep people safe, and to understand what has been proven about a product in clinical trials.
This is why so much of what we all know about diabetes and the “work-arounds” come from the blog world and other online conversations that happen between patients – not companies that sell these items. People with diabetes see a label and immediately think “that’s nice – now how are people really using it?”
Because you have to get creative with this disease – otherwise it takes up more brain space than I have available these days!
We were together for so long. We even did long-distance for the past 8 months. He’d send emails with my latest labs, I’d send smiley faces back as a thank-you. I was able to see him every three months, and it felt like we’d never be apart. Until I realized: I live in Portland and I’m still seeing an endo in San Diego. Do I love him and his office and everything they have helped me through in my past 12 years of seeing them? You bet. Is it feasible to keep seeing him when I live a two-plus hour plane ride away? Not at all. I don’t want to call it breaking up, because one day, I might be back in his office. But it is time to see other endos, and preferable one that lives in the same zip code. And man, it is hard to find a new joint when you’ve been spoiled with world-class care at the last place.
Truly, my last endocrinologist was a dream. He was a legend in his field, and his staff was absolutely golden to boot. I didn’t even see the main MD endo there for the last 10 years, but his PA who is also a CDE and one of the most talented practitioners I’ve ever had the privelage of meeting. I miss that office dearly and wish I could box them up and move them right here to Portland but alas, that’s apparently not how medical practices work. Shopping for a new endocrinologist is hard enough in a new city, but this selection carries even more weight because this is the doctor that will very likely be my endo when Jacob and I decide to start a family (and in case that sparked any question marks for you all, I’m drinking a glass of red wine while I write this so nope, it’s not happening all that soon!). This is a provider I will need to count on in the most crucial time of my diabetes management and I need him or her to be awesome. Not adequate, but awesome.
I’ve got a few names to check out from my previous doctors and some locals, and I’m slated to see somebody in early March. This person came highly recomended from a few folks, but you can imagine how my confidence was affected when, after scheduling my appointment, I asked if I should bring my CGM for downloading to the appointment and the nurse said “what is that?” Yikes. I’m not saying every person in the office needs to be a tech genius but if the letters “CGM” sound foreign to you and you work in an endo practice, I get a little worried.
The good news is that I’m in a major city with tons of docs to choose from and plenty of people in this little diabetes world to reach out to for their recomendations. The bad news is that it might take a while, but I’m willing to work at it to find the perfect match for the next chapter in our lives. I hope this office can handle my OCD-oriented Excel spreadsheet logbooks I bring to my appointments. They can be a little….overwhelming. Not everyone has seen a pivot table made out of blood sugars and bolus doses
We’ve all been there with the Rage Bolus. You know – the boluses you stack on top of one another when you have a stubborn high that just wont. Come. Down. Until it totally comes down – usually all at once when all of those boluses catch up with each other, sending you reeling into a down-the-whole-box-of-Girl-Scout-cookies type of low. We’ve all done it before – but have you guys met the Rage Basal yet? I did the other night. And it’s a beast.
I’ve blogged several times before about some issues I’ve been having with going high overnight. My husband and I tend to eat late-ish these days. Between both of our busy jobs and our spoiled little doggy who gets ample park time every day of the week, we often don’t have dinner until about 9pm. We cook low carb, but tend to supplement with cheeses and sauces, which, combined with proteins, can break down hours later and cause a rise in my BGs sometime after midnight.
Last Wednesday, I woke up with a blood sugar of 253mg/dL. I bolused a half unit, and went to an hour-long workout class, which did nothing to assuage the high. Suffice it to say I spent the whole day above 300mg/dL despite bolusing and slashing carbs which was a total downer. Combine this with the fact that I’ve been struggling with overnight highs at least five times a week and I decided to take action. A lot of action. Like raising my basals a full .6 of a unit per hour from midnight to 6am.
I’m always shocked by how quickly basal units can add up. .6 of a unit just seems like…nothing….Until you think about the fact that over the course of six hours, that’s almost four units, and each of those is contributing to active insulin on board. Increasing basals, even in what seems like small increments, can add up very quickly. Which is exactly what happened around 5am the next morning when I woke up in a pool of sweat, dizzy, lightheaded, and with my CGM blaring from the side table that I was under 55mg/dL. I stumbled to the fridge for some cake frosting and fixed the immediate issue, but I had quite the “low hangover” the next day. Headache, tired, and cranky. Lovely. And well-deserved for that epic fail.
Looking back, that was a drastic measure to take with raising my basals. The next night I slashed the increase in half, and that was STILL too much. I eventually found the magic number, but it wasn’t without a few more nights of nasty lows and ruined morning running plans. The right way to do things would have been to slowly increase my basals each night by perhaps .10 units per hour until I woke up with normal fastings. But the “right way” isn’t always apparent when we’re angry and frutrated, is it?
Point taken, basal rates. I’ll cool my jets from here on out, and take that slow and steady approach. Well, at least until I’m pissed off again!