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I started this blog days ago, and it was completely different. When I started it I was still working, though things were slow. My son was still in school. The world was scary but COVID-19 was half a world away. My biggest complaint was getting NO DELIVERY alerts on my pump.

Now I am at home with a very rambunctious 6 year old and a 13 week old puppy, worried about my Mom, my husband, my sister who works admin in a hospital, my sister in law who is a nurse, the aforementioned 6 year old, and, oh yeah...me.

My doctor appointments are being done via video chat. So are my son's classes. Work has almost completely shut down, though we still have a few people out of hundreds going in to make sure our online services are still working. I'm keeping in touch with staff via Facebook and text and, on occasion, getting out of the house to go to the grocery store.

Mostly we've been at home. And unlike many people I am totally okay with this. Yes, my son is driving me crazy. Yes, I miss talking to more people than just my immediate family. However, we are lucky. We are lucky to be getting paid during this shutdown. We are lucky that even if we weren't getting paid we have some savings (I've read that only about 30-40% of Americans have enough savings to cover a $1000 surprise expense, let alone not getting paid for weeks). We have a governor that was willing to take a massive economic hit to the entire state by shutting down casinos, shows, school districts, and anything else that can be considered non-essential.

Yeah, it sucks. It's frustrating sitting at home, playing video games and reading books and watching TV and playing with my kid and my dogs and no it isn't. It isn't frustrating at all. It feels like a vacation, with the exception of the fact that I am terrified every cough and sniffle means I may have inadvertently put the people I love in jeopardy.

My point is, I don't think I'd survive COVID-19. I am not healthy enough to survive it. I have an autoimmune disease. My mom is over 60. I have relatives that work in hospitals. The level of concern I live with is part of the reason that at my last therapy appointment we doubled my antidepressant dosage. I had to go to the store today- I got winded because I raced around quickly, trying to avoid everyone in the narrow aisles, trying to get the car loaded and unloaded quickly so I could return to the safety of my house. And then I read a bunch of college students went spring breaking because they were young and didn't care if they got it. Guess what?

They got it.

Let's be real. Most of the people I know understand that they aren't staying home for themselves, or just themselves. They are staying at home for the hundreds of people that could end up infected by them if they picked up coronavirus and passed it around for a week before they even felt the slightest bit sick. If you are not one of these people then you need to be. You may only get a little sick, or you may spend a couple of days in the hospital. You have no idea how many of the lives yours intersects with won't be that lucky. I know I am more fortunate than most because I'm financially able to stay home. I don't have to go to work. But if I did, I know I would appreciate it if everyone who could would stay home.  Please.

Be informed. Be safe. Be at home.

Resources to trust: 

World Health Organization (WHO) https://www.who.int/emergencies/diseases/novel-coronavirus-2019

Centers for Disease Control and Prevention (CDC) https://www.cdc.gov/coronavirus/2019-nCoV/index.html


List of State Health Departments   https://www.cdc.gov/publichealthgateway/healthdirectories/healthdepartments.html

Who's Tired?

I know I am.

And I don't mean I'm tired as in I didn't get enough sleep last night (though I probably didn't.) I mean I'm tired. I'm running on fumes. I'm empty. No get up and go. I can barely keep my head on. Bone tired. Exhausted. On my third cuppa Joe today and still not entirely sure I am adequately awake enough to adult my way through the day.

I'm kinda used to it, though. I mean, I have a lot on my agenda these days. Work, caring for family, we just bought a new puppy two days ago, that whole "diabetes" thing...

If I'm really honest, that's what I am most tired of these days. I made an unpleasant discovery, confirmed with actual scientific testing if you can call me actually paying attention and making mental notes to confirm my suspicions scientific testing. After fifteen plus years of pump use, my right side is defunct. There is so much scar tissue built up that if I have my insulin pump setting inserted there I end up with NO DELIVERY alerts after a day or two. This poses some issues, the most obvious being I'm not getting any insulin.

Just in case that wasn't clear.

But I'm also not able to stay in Auto Mode if this happens, which is the whole point of this pump I'm using. So that's a big frustration, but no biggie, right? I just switch sides. Only that means my sensor is now on my right side, and while it usually lasts six days on the left, on the right we're having failures. Maybe it will last three days, maybe it will die the day I put it on. Who knows? All I can say for certain is on my right side I can't get it to last much longer than that.

To say I am annoyed with this would not be accurate. I'm not annoyed. I'm angry. I'm tired of my body betraying me left and right (mostly right). First my immune system kills off my Islets of Langerhans, now my body is making it more and more challenging to get the insulin I need to inject because it can't make it on its own. What's next?

https://giphy.com/gifs/ENhDYXpWRr8kg

It isn't as if I haven't tried to keep this at bay, either. I've been a diabetic a long, looong time. There is scar tissue built up in my thighs and arms from countless insulin injections over the years. It's not like it was a surprise that this could happen. And unlike muscle or, to some extent, fat, there's no way to get rid of scar tissue that I am aware of, though I think that as time has passed the "visualness" of it has lessened now that I'm attacking using my stomach instead of them. It's still there, though, under the surface.

There are techniques and tips for avoiding this seemingly inevitable turn of events. Move the injection sites around so the same place isn't getting poked over and over and over for one thing. (I have been doing this.) There are lists upon lists of suggestions online. 3.3 million+ hits for "insulin pump tips and tricks" should garner some useful knowledge, you know, once you get past all of the Google Ads and site not founds and blog posts by random diabetics you don't know and probably shouldn't take health advice from (a-HEM).

https://giphy.com/gifs/7FBS1So9ri8og

As in all things, though, what works for one diabetic may not work for another. I have yet to meet anyone else with diabetes who has an adverse reaction to fish like I do (Whenever I eat fish my blood sugar tanks if I am not careful. Seriously.) So when I see suggestions like, "Take an insulin pump break and give your infusion sites a rest" I am wondering a few things. Like how the hell these people manage to get their insurance to pay for more than one way of treating diabetes, because there's no way my insurance company is going to pay for expensive as hell pump supplies if I'm able to take a cheapy "just use syringes for a couple of weeks like I did when I was ten" vacation from it. I can barely get them to pay for 100 blood glucose test strips a month, and, in fact, I cannot do that because they will only let Medtronic send me 50 a month. 

If you're counting, that comes out to less than two finger pricks a day. 

Bottom line here? I'm tired of diabetes. I'm tired of living it. I'm tired of hearing other people make suggestions about how to treat it. I'm tired of feeling like crap and being tired because of it. But I'm also tired of it being the last thing I think about and pay attention to, because I'm sure that my burnout contributes to the not feeling well. So in spite of the fact that I don't want to be taking care of this stupid thing I think it's time for me to climb back on the wagon and see if I can get this train back on the tracks*. Maybe blogging about it will make me accountable.

*It's also time I stop mixing my metaphors.

No Excuse...

https://gph.is/XJD5Kg 

It's been over a year since I've blogged, and really, I have no excuse for this...I have several excuses.

I'm tired.

I feel completely drained.

I have a LOT going on in my life on both a personal and professional front.

I haven't felt like writing.

https://gph.is/XL8SdT

I know, it's not like it takes much to write a blog, and I could have carved out a few minutes here and there at several points during the last year, but sometimes a person needs a break to deal with things.

So, in the interest of moving forward without confusion, here's what's been going on in my life that is really relevant to this blog:

I still have diabetes.

Shocker, right? But this is a blog about living with diabetes, and I'm not about to sum up an entire year when the basic fact is I've still got it. I've also got depression, stress, worry, anxiety, bitterness, hopefulness, love, inspiration, regret, and a myriad of other things going on, which is why I've been in therapy every other week for the last year, too. 

And, big confession, I'm not taking care of myself as well as I should be.

https://gph.is/15Id1AE

I know, your mind is blown.

And I have a bunch of excuses for that, too. I'm an excuse making machine. Bottom line is I'm taking care of a lot of other people right now and don't really include myself in it, which will get me yelled at when some people read this. I can blame the pump (and have, multiple times) but the sensors don't work right and the settings give me "NO DELIVERY" alarms not because of faulty manufacturing (at least not all of the time) but because after fifteen years I have enough scar tissue built up in my stomach to make a sequel to Scarface. I am too tired in the middle of the night to get up and  program the thing when it beeps at me. I'm too lazy to really count my carbs. And I'm too depressed to not eat the chocolate-cookies-cheese-box of crackers. 

So why blog about this? Because I have a doctor's appointment in a couple of weeks, and I am tired of her always trying to get me to use the latest thing (inhalable insulin? Sure, why not?) in a misguided attempt to get my A1c under control. It probably makes me sound like an addict, but I could control it any time I wanted to. And I don't. I don't want to deal with it when I have a bunch of other crap I have to deal with. The other crap I have to deal with is in many cases temporary. It may be around for a few years, even, but still. There's a light at the end of that tunnel. The diabetes will still be there. 

And before anyone starts madly typing "you need to take care of yourself before you end up with complications" comments, please. I know this. I know that I have to take care of myself. I'm literally telling you I don't want to right now. My major issue health wise this last year has not been this dumb disease that I have been saddled with for almost all of my life. It's been my mental health. The reason I'm saying this is I have a fantastic support system of friends and family that would do anything to help me, and I still feel like Bilbo. 

https://www.youtube.com/watch?v=oLlLV2ExI9o

This may be my own fault. Or it could be circumstances. But I feel like not enough people really understand that the weight of "everything in my head" is something I can physically feel pressing down on me. My self respect and sense of self worth are wrapped up in making sure I take care of everyone around me first, and me later if I have the energy And I know this isn't helping the whole diabetes thing. Neither is the fact that there are Girl Scouts hocking overpriced wares in front of the grocery stores right now.

The thing is, if I was really not taking care of myself at all I wouldn't even put the sensors on, and I wouldn't bother bolusing when I eat, and instead of putting on ten pounds in the last few months I'd be back at my diabetic anorexic size 10 self. I wouldn't be on antidepressants. I wouldn't be going to see a counselor every other week. I wouldn't be forcing myself to get out of bed, listen to my anthem*, read parenting books so I could be a better mom to my son and not fight with him all the time (which adds to my depression), be more involved in work things outside of work, or- dare I say it- be in here writing a blog, which is such a huge release for me. Just stream of consciousness writing like this is actually making me feel better....and for the record, while I was writing this I paused to program my pump when it said to do so.

Calling that one a win.

*anthem:

https://www.youtube.com/watch?v=t99KH0TR-J4

Happy New Year, and, Why I Despise My Insulin Pump

I think the thing I like the most about Chinese New Year is it's a second chance at starting the New Year off right. You messed up in January? No worries! In February you get another chance!

I wish, however, that I didn't have to keep giving the piece of garbage pump I am saddled with any more chances. I don't just hate this thing, I thoroughly despise it. Here's why- and much of this I have covered before-

1. You're told to never buy the first model year of a car, because they are buggy, unreliable, and all together frustrating. Well, this pump is a new model year, and it is all of those things.

https://cheezburger.com/4977546752

2. It....is....slooooow. Slow to the point where my instant gratification programming kicks in after a few seconds and wonders how the hell medtronic could even release this thing with as unbelievably slllllloooooowwww it is. You press a button and it feels like an eternity before the screen changes, which is bad enough without adding that you usually have to do multiple button presses to do even the simplest of tasks on this device.

http://gph.is/1OwKx4L

3. The sensors are supposed to last 6 days. I think that happened once. I usually get about three and then it requires a new one. Whether this is because I don't program it as often as I should or because the sensors themselves are crap or my body has too much scar tissue from 15+ years of pump use is irrelevant to me. As a busy working Mom I don't always have the opportunity to drop what I'm doing and program it when asked, or my blood sugar is too high to program (I've been told not to calibrate if it's over 250), or it's in flux (never calibrate it when you're rapidly rising/dropping, either). There are too many calibration rules to deal with when I'm alone on the desk at work or driving somewhere or just over all busy dealing with things. My life is not all about managing my diabetes all the time, and anyone who thinks it should be can just go away.

4. Automode is still an unmitigated disaster. "Don't calibrate your pump more than four times a day or it will be inaccurate" I was told in training...and yet, I was told "Calibrate required for automode"  at least three times this morning. And since it didn't like the last one, now I have to calibrate the damned thing again. I prick my fingers more now trying to get automode to work than I ever did before I even had CGM. Quite frankly, I don't give a damn how many "amazing" algorithms are running in the background on this thing- if it can't work without one freaking calibration it's a giant #FAIL as far as I'm concerned.

5. The support is garbage. I'm sorry to point this out if the trainer is reading this (which I doubt), but if it makes you feel any better, it isn't just you. I have had more than one trainer not get back to me when I've contacted them with support issues. I've had more than one trainer text or email me to upload my info, tell me they'll get back to me in a day or two, and then I never hear from them again. It's disheartening. It's frustrating. And frankly, I suppose I *could* send a reminder or call and say, "Hey, what's up?" but if it is your JOB to follow up with someone and you can't do it then I'm not sure I really want to work with you. I mean, if your doctor repeatedly says they will call you with test results and repeatedly doesn't do it, you change doctors, right? Clearly that MD is a lazy jerk with no follow through. Sadly, I can't just find a new trainer, because I'm stuck with whomever medtronic has assigned to my geographic area.

https://gph.is/2iDq1Xo

I have a doctor's appointment in a couple of weeks and I'm going to have the worst test results of my life, maybe. Between my inherent laziness, battling depression, and a general fatigue that comes from life I am sure I will not be happy with myself. Bottom line is I need to be better and not rely on the magic device that was so hyped up by the people whose job it was to sell me on it. I fell for the charlatan plot and it's up to me to try and make this thing work as best as I can.

Thank goodness it's a new year.

Overthinking

Depression is a wretched thing. Some days I feel okay, others it takes almost nothing at all to reduce me to a blubbering mess. Sometimes it isn't even days, it's just hey this moment I'm David* Banner and the next I'm the Hulk.  In my case it's probably mostly the grieving process at work, but I've been noticing for a while now that my moods have been swinging a lot more than they used to. At least I don't turn green...

Writing used to be cathartic and now it's just a chore. Let's see how this goes.

I'm not depressed because of my diabetes. That's just life. I saw an article a day ago about a ten year old girl who had passed away at a sleepover because her blood sugar had dropped. This was something my parents were always afraid would happen, which is why I didn't spend the night at anyone's house until I was much older than ten, and even then my little sister had to come along. I had friends whose parents didn't want me to stay over because of the diabetes. As a kid I never even considered this was a thing. I had no sense of mortality. Now, I do. But even now whenever I start listing the things that are stressing me out, my diabetes isn't one of the top contenders. In fact, it's usually an after thought.

Speaking of thought, I'm an over thinker. Every comic you've ever seen where someone is lying awake at night staring at the ceiling thinking about everything is me. I lie awake and I think. I can't not think. I don't know how to stop. Even when I'm asleep I'm thinking. I know this because I wake up a lot at night, and when I do I'm already in the middle of a thought...or more likely, a string of them. And not even a string...it's more like...a cloud. A brain cloud.

Lately, I just feel like my mind is spiraling out of control. I forget what I go into rooms for, can't keep track of my list of things to do, and generally walk around not sure what is going on, where I'm going, what is happening, or if I'll ever regain control of my life.

Weird thing is, I'm actually in control of most of my life. I just don't feel like it. Which kind of brings us back to depression, because I don't feel like doing anything, really, a lot of the time. I'd say I'm just lazy but I've always been lazy and this is...different.

My doctor put me on an anti-depressant, but that backfired in an epic, almost Michael Bay type way. I haven't been sick like that in a long while. It actually kind of depressed me more that this wasn't going to be an option. I've survived this long without them, though, so it really isn't that big of a loss. 

I guess the point here is that it's always something, as Gilda Radner would say, and the something may always be diabetes in the back ground but it's certainly not in the foreground most of the time. For example, the number one thing that wakes me up at night is actually my insulin pump beeping incessantly. But I never think to actually look at the screen to see why it's beeping- I just pound on the buttons until it mercifully stops beeping, at least for a little while. The diabetes is so much a part of who I am that it hardly even registers on my radar anymore. And that's kind of ironic, when you think about it. The one thing I should be thinking about, considering I think about everything all the time, and I just don't.

My theme song.

*Yes, I know in the comics and the MCU movies his name is Bruce. Bill Bixby was David and that's canon in my head so don't make me angry. You wouldn't like me when I'm angry. 

Oscar the Grouch

My favorite Sesame Street character is Oscar the Grouch. I don't have an over zealous love of trash, but I can be a grump. (Incidentally, did you know Caroll Spinney, the same puppeteer who performs Oscar, is also Big Bird, and has been both character since the show launched in 1969? No wonder he has four Daytime Emmy Awards. He deserves more!)

Everyone should read his book, by the way. 

I have noticed that I seem to create a lot of the stuff Oscar covets, though, particularly of the "medical" kind.

Test strips alone are a lot. (Four finger sticks a day times an average of 30 days a month is 120 strips, plus packaging.) And little bloody tissues take up a bunch of space. (Also times at least four- more when my pump is trying to get into Automode, but that's a different blog.) And don't even get me started on the sensor and pump set packing.

Too late.

On July 1st I started to collect all of the diabetes related trash that I created in a gallon zip lock bag, just to see how much of keeping me alive was polluting the planet. Halfway through the month I needed a new bag, and there have been a few things (mostly bloody tissues) that I have forgotten to stash and threw away. By the end of July I had two very full gallon zip lock bags full of medical garbage. If I'm really honest I was expecting more.

Sesame Street and Oscar © Sesame Workshop

But then I started to think about the math. If I fill up two one-gallon bags each month, that's 24 gallons of trash every year that I throw away. I can recycle the boxes that the pump supplies come in, but the rest of it has to hit the landfill. 24 gallons of trash doesn't seem like that much over the course of a year...but then you figure I've been on the pump for about fourteen, and have had sensors for the last six, at least, and before that I was using syringes four times a day...so let's even guess just a gallon a month for that...

I've probably thrown out 240+ gallons of diabetes trash at least since I started on the pump, and maybe 300 gallons of trash before that. Honestly, it's probably more like 450 gallons, because 4 shots a day and two different types of insulin instead of the one, plus extra blood tests, and therefore extra lancets means it was probably closer to 1.5 gallons of trash instead of just one. That's 690+ gallons of diabetes related trash over my lifetime.

If you figure that a standard size drag it down to the curb trash can is about 32-35 gallons, that means I have filled at least between nineteen and twenty-one (and a half) trash cans with needles, bloody tissues, test strips, pump containers, used alcohol wipes, and various other sundries.

Then take into account that there are over 30 million people living in the US with diabetes, but only about 1.5 million of them have Type I , and that's more math than I am willing to do at any given time. That's a lot of trash.

We need a damn cure, people. I don't even think Oscar the Grouch would want to touch this stuff.

John Lennon Said it Best

And it also goes on, regardless of the void that you're now living with.

Three days after Dad passed away I was sitting in pump training. I probably could have cancelled it and put it off for later, but Dad would not have been happy with me for not taking care of myself. I was also out of sensors for the other pump and the new one had been sitting in my linen closet for months, after all.

The new pump I'm on is again a Medtronic. For the most part it's business as usual- I had no problem putting it on and getting it going. It uses the same insulin reservoir, the same insertion settings, and for the most part is very familiar.

Except that it's totally a different thing.

Old pump

New Pump...pay no attention to that high blood sugar.

This new pump has different "modes."  Straight up just on and monitoring your blood glucose (BG) is called manual mode. Letting the pump actually act kind of like a real pancreas is Auto Mode.

Wait, what?

This is some high tech Batman stuff I'm talkin' about here. For one thing, in "manual mode" it has safeguards that will stop the pump from giving you insulin when it notices your blood sugar dropping. As long as the continuous blood glucose sensor is working, this is a game changer.  My other pump would alert me to lows but just keep on trucking along until I either dealt with it or ended up in a coma. And the sensor itself is pretty damn accurate, which is a miracle for Medtronic.

It has to be accurate, because of the whole reason to get this pump. Auto Mode. Auto mode is basically the pump automatically deciding how much insulin I need based on previously gathered sensor data, current sensor glucose readings, and (this is the scariest part) what I input into the device.

Give myself insulin before I eat?

Count my carbs?

What madness is this?

Actually, if I can keep myself in the habit of doing those things, we may see some significant improvement in my next a1c. I had a pretty scary low the other night because I mis-counted the carbs, and today I'm riding high for the same reason, but otherwise since I started using the auto mode on Tuesday I've been pretty steady between 70-160.

I will say this, though, (since you know it's rare I have no complaints)- the new pump is a needy little wretch. I've been checking my blood sugar more than average. More than I think I have since I started on CGM in the first place. (And yes, I know this is a really stupid thing to be complaining about because it's status quo for all diabetics that we get the finger stick several times a day.)

There are other things about it that kind of annoy me. It takes several more clicks to do things now, like silence it or give a bolus. Whereas before a blind person could use the pump now there is a lock on it that requires sight to bypass, so that sucks. And then there's this-

Apparently the adhesives for the old pump gave people a lot of problems, like allergies, so Medtronic changed them. Now there are two redesigned adhesive tapes they insist we use, and the result, at least on my skin, is the above. Itchy, red, painful...it's pretty awful. And of course, once I get it off I'm putting a new one on, and it's a big radius on those things. I've been constantly overlapping that tape on top of already irritated skin. 

Fortunately, the other tape came in packets of ten, even though there were only five sensors in the box. I have tons of them left over, so in spite of the request to use their "new and improved" tape, I'll keep on keepin' on with the old ones until they stop making them so that my stomach looks like I've got horrible rashes all over it. 

Complaints aside, I have high hopes for this thing. If it really can help me regulate my blood sugars better then that's only a good thing. I'm not getting any younger and even though the retina specialist I saw this morning said the pictures of my retinas were "excellent" and that I should keep up the good work, getting things closer to normal is the goal. And maybe this time with this pump things will be just that much easier over all. It's not like I can really control this disease, but guiding it might be an obtainable goal.