Pump

I Lied

This is my first post on Diabetically Speaking in a really, really long time. The last thing I published here was on October 23, 2015. 988 days ago. It’s not that I haven’t been doing diabetes things, I just haven’t been doing them here. So what inspired me to post now, after all this time? Well, I had an appointment with my endocrinologist today and…

I lied.

I lied a lot.

I didn’t mean to. The lies just started, and they kept falling out of my mouth, and I couldn’t stop myself.

liabetes

The nurse called me to the back and we went through the usual rigmarole of height, weight, and other fun basics. No problem there, except I remain confused why they measure me for height every time I’m there. Are they trying to pinpoint the moment when all of the hours spent hovering over a keyboard and glaring at a computer screen finally leaves me with a hunched back and and a driver’s license that needs updating? Why can’t they just accept that I’m 7 feet tall like I tell them? (I’m 5’8″.)

Then the nurse and I sat down together, which is cool, and we started working our way through all the little dings that the electronic medical record wants updated.

Are you still on Novolog? Yes. (Honest answer.)

Are you still on a pump? Yes. (Honest answer.)

Is your insulin to carbohydrates ratio the same? Yes. (Honest answer.)

Are you still using approximately the same daily amount of insulin? Yes. (Honest answer. I’m on a DIY closed-loop system, so it varies. But overall, sure. Let’s go with that.)

Are you still using OneTouch strips? Yes. (Honest answer)

And then it happened…

Are you checking your blood sugar at least 4 times a day? Yes. (Honest answer.) And no. (Also an honest answer.) *cue the awkward Nurse pause*

I have the Dexcom G5 continuous glucose monitoring system. I check my blood sugar dozens of times a day. Some days, maybe even 100 times a day. I can do this because I wear a sensor, and I can see my blood sugar on my phone and whether it is trending up or down or holding steady in near real-time at any given moment. The G5 systems requires me to calibrate it twice a day. So if we’re counting fingerpricks, I do that twice a day. Rarely more than that simply because it’s unnecessary unless something weird is happening (like if I feel low, but my Dexcom says I’m not… I have trust issues).

trustfund

My health insurance wants to know that I am pricking my finger at least 4 times a day. To them, that means I’m staying on top of my diabetes and all the silly and incessant decisions that it requires every single moment of every single day. So, I lied. Yes, I prick my finger 4 times a day. If you ask me for my logs, I’ll lie then too. BECAUSE IT DOESN’T MATTER HOW MANY TIMES YOU ARE PRICKING YOUR FINGER WHEN YOU ARE MONITORING YOUR BLOOD SUGAR 24/7 WITH A CGM.

Are you still taking your statin? Yes. (Total lie. I should be. I’m just not. Mainly because I forget. In my defense, I did walk that lie back a little and confessed that I need to do a better job of taking my statin regularly. Small victories.)

Are you exercising regularly? Yes, when I can. (Liar. I work at a university, and take classes, so I walk across campus almost every day. Is that exercise? I mean, it’s better than sitting on my duff and not doing anything. But I’m not getting that heart rate up and pushing any boundaries. So definitely room for improvement.)

Are you in any pain right now? No. (Why are you doing this?! You literally can’t write with a pen and pencil anymore without having to shake the pain out of your carpel tunnel riddled hands!)

Have you felt down, blue, depressed in the past week or two? No, I’m fine. (Help me! I am literally seeing a therapist (recent occurrence) to try to figure out how to manage my depression, deal with being overwhelmed almost every moment of every day, figure out how to be happy more consistently, and how to unpack and process things in my life that I do not have the tools to know how to deal with. I’m a picture of success on the surface, and an absolute mess underneath it all. I’m highly productive, and I keep most of my problems inside. I feel extremely vulnerable even sharing this paragraph. Ugh. Gross. I’ll probably just keep lying about this one.)

imfine_helpme

Source: https://weheartit.com/entry/28685038

The visit was relatively uneventful. Mainly because I lied. A lot. But the thing is, why did I feel like I had to lie in the first place? Shouldn’t I be trusting these people to help me, to make me the best I can be, to guide me toward living to be 400 years old? I’d probably be Hobbit-sized by then if they keep checking my height, but at least I’d be as healthy of a Bagginses as I could be.

gollum_truth_notlistening

This sounds like I’m assigning the blame to someone else, but hear me out. I’ll own my lies, but it is important to realize that there is a reason for them. The reason is a systemic problem in our healthcare system. We are encouraged to lie to our healthcare professional partners all the time. The lies are even incentivized!

If we don’t lie, then we admit that we are imperfect humans, and our health insurance then has reason to deny our claims, charge us higher premiums or additional fees, or even cancel our coverage altogether. Bagginses don’t like punishments. That doesn’t happen in ever case, and shouldn’t happen in ANY case, but it does. So many of us have been denied coverage of some necessary medical device, medication, or treatment, and had to fight an uphill battle to appeal to a name without a face that we truly do need whatever it is to live with or overcome our condition.

If we lie, we can sleep at night, resting assured that we have insulin, strips, needles, pens, pump supplies, CGM sensors and transmitters, and the infinite recipe of other medications and supplies that go along with our living well with diabetes and any other chronic condition the world may throw at us. Sometimes, many times, lying is easier than being honest.

I really wish our healthcare system would stop making us lie to them. I wish these electronic medical record systems would stop trying to quantify what it means to be well and be sick. I’m a researcher, so I get it, data is important. But data is useless when it is so blatant that you are simply collecting metrics. That is when you get rote answers, and lose the humanity that should be paramount to everyone’s participation in healthcare.

anthonybourdain_withtattoosRecently we all lost Anthony Bourdain, and he was a master at asking very simple questions that allowed the people he interviewed to open up to him. I want my healthcare people to do the same with me. Sit down with me, away from the computer, and ask me very simple questions. How are you doing? What brings you in today? What is one thing I can do to help make your life better today? As Anthony Bourdain did with the people he met, ask me, directly and compassionately, what makes you happy?

I promise I won’t lie.

High Times in Jacksonville

For my birthday, A-Flizzle surprised me with a trip to Jacksonville for a weekend of good food, good times, and great friends. It was such a surprise! I never saw it coming. I was all, “Hey, I’m going to work” and she was like, “No, we’re going on a weekend getaway” and I was like, “Oh wow, I’m so surprised! This is so cool!”

Okay, who are we kidding? I hate surprises, and she knows it. That’s why she’s a keeper. To prevent me from freaking out, A-Flizzle made this awesome timeline of what was going on and where we needed to be. Actually, calling it a timeline doesn’t really do it justice…it was a FUNline. Look at this picture while I do the pencil sharpener…

Birthday Funline 2013

Friday started with a beermaster’s tour of the Budweiser brewery in Jacksonville. Upon arrival, I struck up a conversation with the tour guide who noticed my insulin pump. She couldn’t quite grasp how in the world I could possibly have Type 1 diabetes and drink a beer, at the same time. It’s not an exact science, but I explained to her the basic idea of factoring in blood sugar levels and counting carbs and dosing enough insulin to cover the difference, just like anything else we people with diabetes (PWD’s) eat or drink. Yes, I know there’s some long division and a square root of Pi and other fuzzy math that goes into calculating carbs and insulin when drinking alcohol for some PWD’s, but your diabetes may vary (YDMV). Suffice it to say, it was nice to meet someone in the beer brewing industry who was legitimately interested in how everyone might be able to enjoy what they put so much effort into making.

Birthay 2013 - Beer from the Keg

The tour was fascinating, and getting to sample beer directly from the ice cold tanks was delightful. There is no way to get a fresher beer than that. One lady on the tour, who didn’t even like beer, even became a convert. I’ve got a newfound respect for the Budweiser brand of beers now, and the care that goes into making each and every one. It’s a process of Willy Wonka proportions, and I’d highly recommend the tour if you every have the opportunity. Also, the gift shop is a great place after you’ve had a couple. Just saying. (I left with a Landshark beach umbrella and a hoodie with a built-in beer koozie on the front. So…yeah. In my defense, I did pick those things out BEFORE the tour.)

Birthday 2013 - Amanda and Martin and Beer Kegs

I also found my dream job in the Budweiser brewery…

Birthday 2013 - Dream Job

Afterwards, we met up with Jacquie and the family for dinner: Mediterranean food, for the win! Nothing chases an afternoon at the brewery like chicken shwarma. Shwarma…mmm. Just sounds delicious, doesn’t it?

The next morning, my pal Bob and I were supposed to get up and go for a bike ride. However, it was cold-ish, and the temperature was not appealing to my sense of get out of the warm bed and go pedal at all. After texting back and forth for a bit about it, we decided to do what any normal person who doesn’t feel like braving the cool air to go on a bike ride does on a Saturday morning.

We went and ate bacon.

After that, A-Flizzle and I made our way toward the spa, where she had us lined up for a facial and a 1-hour deep tissue massage, respectively. Now, I’ve gotten a massage before, and my pump was never a big deal for the masseuse. In fact, every massage that I’ve ever gotten, I was able to keep my pump on and just slide it to the side and the masseuse was able to work around the tubing and the infusion set. No big deal, right?

Except, this masseuse was different. Although she was plenty nice enough, and she did a spectacular job of getting some of the knots out of my back and neck and shoulders, she was really weirded out by the idea of having to work around my continuous glucose monitor (CGM) sensor and insulin pump and infusion set. Because I needed that ding dang massage more than I needed diabetes at that moment, I decided to dose a couple of extra units for the hour, and then I took off my CGM sensor and my insulin pump so that I could get some relief. Stop me if you’ve heard this one before.

In hindsight, I should have just let the masseuse be uncomfortable. Once the hour was up, I was a blob of mostly relaxation. A-Flizzle and I took a leisurely pace back to our room, at which time I stupidly decided a birthday cupcake was in order. A cupcake? Really?! Dumbass. Then I proceeded to get a shower, which was delightful, and full of hot water, and a window that I could look out of while scrubbing off eucalyptus oil. I’m like a cat. I can’t resist a good window to look out of. Hours of entertainment. Fortunately, the hot water didn’t last.

Keep in mind, I failed to put my insulin pump back on through this entire episode of Birthday for Dummies with Diabetes.

By the time I got done taking my sweet time with everything, my blood sugar was through the roof. I don’t even remember what it was by the time I put a new infusion set in and reconnected my insulin pump. Probably somewhere around 1,000,000 and rising. I felt like crap. Way to ruin your own birthday there, Wood. Brilliant.

I dosed the snot out of the high in hopes that I could get it at least dropping by the time we had dinner at one of my favorite restaurants in the whole wide world, 13 Gypsies. I was moderately successful, but really had to focus dinner on the lower carb items and lots of water to try and offset the effects of the afternoon.

Birthday 2013 - Martin and Amanda

See those eyes? That’s not glassy eyed from birthday beers. That’s worn out from fighting a high blood sugar all afternoon. I’d have preferred the former.

I guess the moral of this story is to never disconnect your insulin pump and remove the inset unless you have another one handy for immediately after whatever necessitated your getting naked. Because I am the last person in the world to vote against being naked. Also, maybe tell the spa and masseuse that you have type 1 diabetes and use an insulin pump so that they don’t freak the eff out when they see that you’re bionic.

Maybe also do this in an Austin Powers voice, just for style points. Yeah baby!

Magic Strips

A Tale of Two Pumps

Once upon a time, in the land of Diabetes, there was a person named Martin. This stunningly handsome and striking specimen of a man had endured the variety of ways to treat and manage the kingdom of Diabetes his entire life. Having been abandoned in Diabetes at the wee age of two years old, he had lived through the olden days of determining blood sugar by careful aiming his sword at magic strips that could tell him the range of his blood sugar level.

Magic Strips

Back in those days, Diabetes was managed quite differently than it is in our modern day. Similar to the race between the tortoise and the hare, two different kinds of insulin were used in relay to get our budding hero through the day: One a fast-acting rabbit-like insulin aimed at beating the gangs of sugars and carbohydrates at the beginning of the day, and the other a turtle-paced insulin made to finish out the battles as the day grew long. This type of managing Diabetes seemed to work reasonably well for a good number of years, until the evil dictator Adolescence descended upon the land and threatened to throw the whole world into chaos.

Adolescence would attack with severe low blood sugars, often resulting in visits to the dreaded land of Hospital, where to this day inflation runs wild and it takes nearly a lifetime to escape. As Adolescence continued its terrible reign of…um, terror…our fearless hero Martin teamed up with his trusty wizard, Endo, and called upon the forces of Multiple, Daily, and Injections. Armed with the power of MDI, Martin was able to defeat the evil Adolescence back to the twisted realm of Puberty, and for many more years peace once again ruled the kingdom.

But alas, peace was not meant for a lifetime. As the years wore on, Adolescence’s cousin, Adulthood, came to power in the realm of Puberty and declared revenge on Martin. Adulthood struck suddenly and deliberately, causing seizures, confusion, and shaking from fear. Adulthood would attack at even the most innocent of times, during exercise, vacations, trips to the market, and even during sleep. Adulthood screamed from the mountaintops, “Hear me Martin, your MDI is no match for my wrath!”

Tired, nearly defeated, and not knowing what to do, Martin turned to his trusted wizard and said, “Endo, I just can’t do this anymore. I try so hard, and feel like I’m doing everything right, yet Adulthood still manages to outsmart me in this land of Diabetes.”

Endo knew Martin’s heart was pure and true, and that his will could never truly be beaten. With a mighty wave of his staff, the Rx Pen, Endo conjured a beast like no other. Formed from the power of lightning, the miracle of insulin, and the technology of the future, Endo presented Martin with a new tool for fighting Adulthood in Diabetes…the Animas 1250 insulin pump!

Animas 1250

With the Animas 1250, Martin was not only able to bring peace back to the kingdom, but he was also able to partake in the joy of eating at odd times, sleeping until midday on the weekends, exercising without having to eat more calories than burned, and even indulging in the occasional late night ice cream.

Yet, Adulthood would not go quietly into the pages of Diabetes history. Watching and learning how the power of the Animas 1250 was wielded, Adulthood planned its attacks carefully and maliciously. Adulthood would test the weaknesses of the Animas 1250 by introducing a slow and steady low blood sugar, fooling Martin into believing that nothing was wrong.

Finally, after Martin had spent a long day toiling in the fields, Adulthood struck in an attempt to finally capitalize on its long-awaited revenge. With a severe low of 33, Adulthood knew that its time had come to capture the throne.

Yet our fearless, well-groomed, and attractive hero was prepared. As Adulthood celebrated its victory and marveled at its use of a Larry Low, Martin fought back the surprise attack with the spirit of the swamp, Gatorade! Adulthood cowered in defeat, outmatched by the sugars and electrolytes in the magical potion.

Although Adulthood was defeated once again, Martin realized that the Animas 1250 was no longer the superior weapon in the Diabetes fight. Martin once again turned to Endo for a solution. Endo, who had locked himself away in the Diabetes research labs for years in anticipation of this day, with a mighty wave of the Rx Pen, revealed a new pump from the technological land of Medtronic…the MiniMed Revel!

MiniMed Revel

To this day Martin and the MiniMed Revel rule the land of Diabetes with a plastic grip. Partnered with the built-in omniscient Continuous Glucose Monitor, the influences of Adulthood on the kingdom of Diabetes have been mostly kept at bay, with only an occasional uprising. However, no one in the land of Diabetes can forget the low blood sugars that almost kept them from these prosperous times. Anticipating the next time Adulthood tries to rise up, the people of Diabetes vow to always remain a community, to support each other, to be Friends For Life, and to never give up in the fight for a cure, when Diabetes and Adulthood can finally live free from one another.

Gusher with backing

A Pain in the Abdomen

Some days diabetes is, for all intensive purposes, easy. Blood sugars stay in range, we feel good, no infusion sets go bad, and we can eat whatever we want, dose accurately, and live happily ever after.

And then there are days like last Friday. Blood sugars spiking into the 200’s for no real reason. Then just a touch of insulin sends things plummeting to below 70. Back and forth, to and fro, round and round the mulberry bush, and all that jazz.

I spent all day with my BG’s bouncing around like that, riding the proverbial “glucoaster” until the wheels nearly fell off. I got home after work completely exhausted and agitated from correcting the highs and feeding the lows all day. I had a total of two cups of oatmeal during the day (breakfast and lunch), and I’m pretty certain that it’s the new pizza for me. I dumped the entire container, and added it to the list of “Things my diabetes has a shit fit about.”

To try and relax, I decided to take a hot shower and just clear my head. It was almost time to change my infusion set anyway, and I like to be so fresh and so clean when I put a new one in. Once done, and feeling a little better, I removed the old inset and got ready to insert a new one. I’ve been trying to get more comfortable with using the auto inserter, or as I like to call it, “the harpoon thingy”, instead of manually inserting a new infusion set. Supposedly it’s less trauma on the sites to use the harpoon thingy, but I’m not convinced yet.

So inset loaded in harpoon thingy…cocked…3…2…1…CLICK.

Blood went EVERYWHERE.

For the first time, for me, I actually struck gold…er, red…with a brand new inset. I hadn’t even gotten the backing removed yet so that I could make it stick. I’ve had gushers in the past, but usually at the end of an inset’s life when I remove it and the site is irritated. This was new, and all over me, the counter, my pajama pants, all under and around my CGM sensor, and I think even the cat got sprayed a little (sorry kitteh!). Apparently I was pressurized.

Gusher with backing

So I tried again, with a brand new inset. Ask any pumper, it’s frustrating to waste those things. It’s money going down the drain, and even with insurance, they aren’t cheap. But, hard to use a pump without something to connect it to.

Second inset loaded into harpoon thingy…cocked…3…2…1…CLICK.

At this point, I felt like I should bust through somebody’s wall like the Kool-Aid guy and yell “Oh yeah!” because fruit punch was all over the place. Another gusher, this one fortunately restricted to just all over me.

Oh Yeah! - by stallio on Flickr

I was so frustrated. I cleaned up the mess, then took to Twitter and let the venting commence. That’s the great thing about the DOC, we’re always around. I just couldn’t bear to stick myself again after having failed twice. I’ve been doing this for years. What was I doing wrong? One gusher is an event, but two in a row?! That’s an anomaly.

I took a break. I needed a minute to chill out, and breathe, and not throw anything. It took probably 20 minutes, but I finally worked up the resolve to try again. Third time is the charm, right? I chose not to use the harpoon thingy on the third try. That was the one variable that hasn’t been traditional to my new infusion set process over the years. Call me old school, but if I’ve got to stab myself, I’d rather it be by my own hand and not by some plastic spring-loaded contraption. I also moved to a completely different area, wondering if maybe there was bruising or something going on underneath the surface of the former sites that was causing the gushers.

Third time worked just fine, and I breathed a sigh of relief with the realization that I could finally hook my pancreas on a string back up to my pincushion body after nearly an hour of it being unplugged. Oh goody, another high BG to correct. But at least I COULD correct it now.

It took me a couple of days to find the courage to put a new CGMS in, after the issue with the harpoon thingy for the infusion set, and my stomach still being sore from the repeated stabbings of Friday evening. With all we do to avoid painful complications of diabetes, sometimes living with it can be painful as well.

But I’m still thankful that I can LIVE with diabetes, despite having to live with diabetes. Even if it is a pain in the abdomen sometimes.

Ace of Diamonds

Holidays with the BG’s

You know what’s fun?

Christmas shopping. Finding that perfect gift for a family member, loved one, friend, boss, or frenemy that you’ve been waiting since last year to get back at during the White Elephant party. Yup, somebody is getting an angry-faced pig cookie jar this year, and it’s not going to be me.

You know what’s not fun?

My CGM alarming and saying my BG is 91 with two double arrows pointing down while I’m Christmas shopping. That does explain my lack of focus though, and why it was taking me an abnormal amount of time to evaluate the power tools when I originally went to the store to look for a flashlight. Go figure.

Holidays are treacherous times for us PWD’s, and I know I’m not the only one dealing with it. We have a sleigh load of food available at work, home, at parties, and it’s really hard to guesstimate exactly what is in all that “stuff” we’re shoveling in our mouths by the handful taste testing. I have a habit of overestimating, and then finding myself battling a Larry Low two or three hours after indulging.

Part of that is because I despise the feeling of a high BG. It feels like my blood has turned into molasses, I’m cranky because I don’t feel good, and I get impatient watching my numbers not drop back to normal at a rate that meets my expectations. A 200+ reading on my meter or CGM leads to me being irritated if it is anything more than a very temporary thing.

At my endo visit a couple weeks ago my A1C had bounced up a bit from 6.1 to 6.7, while I’ve been trying to prevent severe low BG’s that were plaguing me before. Now, I know that many people would jump for joy over a 6.7, and I realize that it isn’t a bad A1C necessarily. However, it makes me feel like a failure. For those of us waging war on a day-to-day basis with diabetes, we are harder on ourselves more than anybody else is. I hold myself to a high standard when it comes to my diabetes. Whether or not it’s the reality of diabetes, I need to feel like I have some control of it, besides just telling it where it can go with a colorful description of the hand basket it can go there in. I feel I can do better than a 6.7, and get it back closer to 6.0. This is just my goal, and YDMV.

For the longest I was pumping with a single steady basal rate, 24 hours a day. I know that isn’t how the body works, but I was bolusing and temp basaling all around it, basically manually adjusting my rate of insulin as necessary. Then I got my CGM and a Certified Diabetes Educator (CDE) and Medtronic rep who is really knowledgeable about how BG’s ebb and flow, the dawn phenomenon, effects of activity, and many of the intricacies of living with diabetes. Presently, I am working hard with my CDE to get my basal rates optimized, examining trends, analyzing BG’s, and getting a better grip on preventing my BG’s from dropping too low and spiking too high. Perhaps I could have chosen a better time than December to attempt this, but meh…pressure makes diamonds, and I’m determined to ace this.

Ace of Diamonds

Since I met with my CDE and adjusted my basal rates, and then made a few more adjustments on my own after finding times of the day that my BG’s would spike inexplicably, things seem to be getting better. My average BG in the last week is down to 157 mg/dl, from a pre-adjustment average that was closer to 200.

I’ll take that kind of progress any day, and even more so with the holidays.

This Attraction is Closed

Time for a Change

I remember the days of “timestamped injections” where I would take a specific dose of insulin at a specific time of day with no special considerations for what I might have been eating or doing at the time. I also remember very clearly my thoughts when I switched from that old method of diabetes management to MDI (multiple daily injections). I had been having some crazy low episodes in my early 20’s that facilitated the necessity for a change. I would get confused while driving or trying to do something, other times just wandering around completely out of it. I was found passed out on the kitchen floor one morning completely unconscious, and the one that really put me over the top was when I had a seizure from a low BG while on a roller coaster…A ROLLER COASTER!

I considered a pump at the time from MiniMed, but my own fears made me choose MDI because I was not yet ready to rely on a machine to keep me alive any sooner than I absolutely had to. Maybe I am a control freak when it comes to my diabetes, but I didn’t feel an insulin pump was as reliable as I needed it to be for my own comfort. Plus, I had no insurance, which plays a big factor in people’s ability to get a pump even today.

MDI worked for a time, and staved off some of the low episodes. But not all of them. After all, diabetes is an unpredictable beast, and even the best control can be thwarted for seemingly no reason at all. One example is when I went on a 12-mile bike ride by myself one evening, and before I could get back home I was pushing my bike down the street fighting off a low BG seizure. After getting home, getting help, and recovering from that episode, I knew that it was time for another change.

My endo at the time helped me get my first and current pump, the Animas 1250. Since having the pump, I have still had some lows, but so far not near as dramatic as before. My Animas 1250 has allowed me so much more freedom in my life with diabetes, and ability to control it, than I’ve ever had before.

Recently however, I’ve been dropping into dangerously low levels again (see my recent post Bike Ride & Motivation). Being in my early 30’s, and arguably too independent for my own good, I know that it is up to me to take care of myself. No one is going to do it for me. That is why I am very excited about my upcoming transition to the Medtronic Revel insulin pump with Continuous Glucose Monitoring (CGM). Once again it is time for a change, and I am ready to use technology to its full potential to help me not only manage my diabetes, but to keep me healthy, aware, and alive until it is time for the next change.

One day I hope that we willl be able to abandon these pumps and needles altogether. In the meantime, I will use technology and whatever diabetes treatments I can get my paws on to make sure I am around to see the day when we finally shut down the glucoaster thrill ride once and for all.

This Attraction is Closed