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!
All low blood sugars suck, but there are some that suck more than others. Like the one we’ve all had after Thanksgiving dinner where you bolused out of your ears to cover all that food, and then it turns out it was too much insulin so now you’re extremely full and have to eat again. That’s a pretty annoying low. Lows in the middle of your favorite workout are always particularly obnoxious. But I’ve got a brand new one to add to the Top 10 Most Annoying Low list: The Airplane Descent with Turbulence Low. Let me explain.
Last weekend was the tail end of what shall be known as Snowmageddon here in Portland. Portland, although used to rain, is entirely unprepared for snow. So when a foot of the fluffy white stuff fell over the course of a few days, the city sprang in to a veritable mayhem (and by that I mean no one went to work, but the bars were full. At like, 10am…go figure). I was fortuitously in San Diego at my company training for the bulk of the storm, happily bypassing the bulk of the inconvenience. Until I had to get on a plane last Saturday to come back to our Winter Wonderland.
The flight was shockingly on time, but getting to Portland amidst a variety of passing storms in our flightpath made for one of the bumpiest flights of my life. Now I don’t have a fear of flying, and turbulence doesn’t scare me. But I am, unfortunately, totally prone to motion sickness. The flight attendants tried twice to bring the carts down the aisle and both times had to return them to the back of the plane and take their own seats. I was seated only a few rows back from the very end of the plane which meant that the carts never got to me AND our seats had even more bounce to the ounce as we flew. By the time we started our descent, I was feeling so green I thought it was only a matter of when I would toss my cookies, not if.
It was near 8:30pm and I had not eaten since noon. I had bolused for a post-prandial high though around 5pm before my flight, meaning I still had a little active insulin on board. I checked my CGM mid-flight and had been steadily moving downward, but still over 100mg/dL. Somewhere between that check and the descent though, my BGs also started taking a descent. As the plane rattled back and forth, I felt my brow start to sweat, and a little lightheadedness kick in. I wanted to reach for my CGM under the seat in front of me to see just how low I was, and possibly grab a GU pack, but I felt so nausous that if I leaned forward I thought I’d lose my lunch for sure. I couldn’t even bring myself to reach for the barf bag in the seat pocket in front of me.
I had to make a decision – risk going lower and wait until we landed, or risk yakking and getting my CGM. I decided I would be on the ground in less than 10 minutes, barring any interference and that I’d wait it out. I slowed my breathing and leaned back in the chair, trying to concentrate straight ahead as the plane bounced around. Finally, I heard wheels deploy and seconds later, we were touching down. As the plane braked, I felt my body relax a little, and about a minute later enough nausea had passed that I was able to reach for my CGM and see this:
I grabbed a GU and choked down the contents as the last waves of nausea passed over me and moments later I started to feel better. I am sure the people next to me thought I was a little off between the deep breathing, inhaling a pack of GU, and me staring straight ahead for the better part of the flight. But hey, they probably would have liked me less if I’d thrown up on the them, right?
You might remember this post about Kris Freeman from a few years ago (have I really been blogging that long??) about pretty much the worst timing for getting a low BG ever (the Olympics). But, looks like he’s fine-tuned things for this run and upped his gadget game – and I ain’t talking about skis. Check this out:
Now you’re cooking with bacon Kris. Boom. Go USA!
I’m frustrated. This shouldn’t be news to anyone who is also living with this disease, because really, this is something we all say pretty much every day. This disease makes no sense in general, but lately it seems to be ever more obnoxious than usual (if that’s possible).
I’m having that feeling that many of us get with each passing year of “well, THIS didn’t used to be a problem for me.” I used to have A1cs in the sixes. In fact, it had almost been 10 years since I’d had anything above a 6.7% And then I went to Asia and back on MDI for three months and changed time zones every other week and things went up quite a bit. But I expected that I would bring things down just as quickly as they had gone up. I thought just give me three months, I’ll be back in the sixes and humming along with my normal routine. But then we moved, and planned a wedding, and I stressed about getting a job and insurnace and things weren’t so easy to reign in. Don’t get me wrong - I’ve dropped my A1c by .8% since I’ve been back. But it’s STILL not back in the sixes where I was just one year ago. And I feel like a broken record saying that it will get better, that I just need to tighten things up a little more.
I’m trying ot be patient. I set my CGM to alarm to beep at 150mg/dL instead of my usual 180mg/dL, in an effort to get to correct things more quickly. I’ve slashed carbs and tried to squeeze in more workouts, even when I’m exhausted. But when I do a three month dump of my CGM data, I can clearly see that my BGs are still averaging 163mg/dL over 90 days. Which means my next A1c will be right where it was last time – at 7.2%. I feel like I keep asking myself, what’s changed? Why is this so much harder that it felt just a year ago? Is it getting older? Is it my stress level? Am I getting rusty at this whole diabetes thing?
I don’t know what the answer is. I do know that I have to keep trying but today, I couldn’t be more over it. I don’t want to basal test. I don’t want to re-evaulate my carb count. I don’t want get up five days a week at 4am so I can squeeze in my workouts (especially because it’s snowing in Portland right now – what the eff?!) I just….don’t. I want to focus on work, and my husband, and my dog, and my friends, and that new Cuban restaurant down the street. I don’t want to deal with having diabetes today.
But like a houseguest that overstays their welcome, I know this ain’t going anywhere. In times like these, I take a day off. I let myself have some crummy numbers for a day. I have pasta. I have a glass of wine. I half-ass the carb count. I try to be kind to myself and remind myself that no one invited diabetes in the first place but that it’s here to stay and that some days will be easier than others.
And then, I get up the next day and just try to do better. That’s all you can do -and how lucky are we to have tomorrow to try again. Not everyone gets that. Today though, I’m taking a diabetes snow day. Someone hit the snooze button!
…you realize you have four more days of you business trip left and you only packed a sum total of one-fourth of a bottle of Humalog. Sure, there’s your emergency “spare” bottle (an Apidra bottle that expired a month ago that’s definatley been stored in some too high or too low temps while in your luggage), but who really wants to go there? Though I technically have enough insulin to fill my next pod tomorrow night and make it all the way home on Saturday, I don’t have wiggle room for a broken insulin pod or worse, dropping and breaking the glass vial (which did indeed happen in Mexico once- yikes! That’s another post though…)
My back up plan? Well, let’s just say it’s a good thing I’m from San Diego and while I’m here, I have several friends with diabetes I can call as well as my endocrinologist (and his sample stash) just up the street, if it really came down to it. But that doesn’t take into account an emergency in the middle of the night, or in the middle of important trainings and meetings I’m here for this week. Between this and last week’s on-the-road lack of preparedness, my usual Eagle-Scout level of safety is slipping, to say the least. Although I know this is a function of me having way too much on my plate right now as I tackle my new job, it’s still no excuse for not being prepared. Diabetes: the most annoying full-time job you never wanted…with a never-ending to-do list and things to remember.
Recently, a friend who has diabetes posted on Facebook that she doesn’t go through the x-ray security machine at the airport beacuse x-rays, over several exposures, can denature insulin and render it ineffective. And as someone who has been on about 20 flights in the past 12 months and wears her insulin pump through every x-ray secutity checkpoint, this was A.) news to me and B.) not good news.
I had not heard this before, and I also have to say that personally, I don’t recall experiencing an issue with it. However I do recall plenty of trips where I’ve had less than awesome blood sugars, although I’ve always blamed that on travel/time change/lots of sitting/weird food. Could the scanners have fried my insulin a bit, pushing my BGs up for a few days? Hard to say, when there are so many factors at play.
My friend noted that it’s often several exposures (i.e. folks who travel on a plane and therefore go through security several times a week) that really do the most damage, saying she has a few friends who have testified that an entire cartridge of pump insulin has been fried due to the x-rays. But she also noted that there’s really no need to risk any denaturing when you can just get a pat down and save yourself from worrying about it at all., which is a good point if this is really a thing. Although, those are also a pain to request and endure in their own right for different reasons.
There’s a mixed bag of information about this when I looked it up on the Google Machine. Some folks swear it’s a problem, other people say there’s no scientific evidence to support this idea.
So of course, I turn to the only reliable source I really have in this world for all things diabetes (which is you guys) to find some answers. Is this a thing? Do I need to be opting out of x-rays at the airport? And what about extra insulin packed in my carry on that goes through the even more powerful x-ray machine? Can that be denatured? Inquiring minds that are soon to be airborn again want to know!