Insert clever play on words here

This has been a hell of a year for me and my family. I've had to have surgery twice. I've never had a major surgery before, and now here I am with multiple scars and the year is only half over. Fortunately both of them seemed to be successful. I think. 

Back surgery was first, and I was flat out for almost a month before I went in for it. I feel like I am still recovering from that one, though now instead of my left side hurting it's my right. Am I going to have to have surgery again? I really hope not, but the magic 8 ball will tell. Or the MRI.

https://www.orthovirginia.com/mri-ct/

Hope you're not claustrophobic

Speaking or MRIs, when they were doing them on my back a mass was discovered in my left kidney. As a diabetic, anything that relates to a kidney is somewhat terrifying. Once I had my back taken care of we had to pivot to this 4 centimeter thing that was hanging out in my abdomen. It wasn't causing trouble and was found by accident (or by an observant MRI technician, at least) but the C word was mentioned, and I am still waiting on the pathology report. 

https://www.youtube.com/watch?v=Z159OMu1tOk

How long does it take to get a second opinion?

I won't say that the news is all bad, since even though the second opinion on whether or not the mass was cancerous has yet to come back, the doctor thinks it most likely was benign. Or at worst a non-aggressive cancer. So I am trying to be optimistic. But after several CT scans and MRIs and a freaking surgery I would like to know, for certain, what exactly was going on in my body.

Is going on in my body? 😧

It doesn't help that I keep getting emails from the hospital that say there's a pathology report, yet when I log in there is no report there. It's gut tightening, teeth clenching for a moment, and then utter disappointment that I still don't know. Why tell me there's a report when there is, in fact, no report? I mean, what if they're wrong and it's actually a worst case scenario? Sure, they checked to see if there were spots in my chest and saw nothing, but that was in May. Maybe it did spread before they took it out. Or hopefully I'm just over reacting. 

Of pumps and puppies

 I spent the weekend yo-yo-ing like Tommy Smothers.

#smothersbrothers #yoyo

My blood sugar was up, and then down, and then up, and then waaaay down, and then up, back waaay down, and then up, up, up and then I don't know what even happened. I woke up this morning with my pump telling me it was out of insulin and my blood sugar was 79.

Then I got to work and all of a sudden I was getting "Change Sensor" alerts because apparently the blasted thing wasn't working properly. I spent most of the weekend not giving insulin, giving too much insulin, finger sticking to check and see where my blood sugar was (and it wasn't as off as I would have expected), only to find out today that the sensor was whack and I wasn't going crazy.

I was in tears this morning because I had no idea what the hell was going on with my body.  I have an appointment with my endocrinologist's office later this week, and was ready to go in and say, WTF is WRONG with me? If it weren't for the fact that we'd added a puppy to our family this weekend as well, I would have been even more upset. As it was, she kept me pretty occupied.

She's itty bitty... for now

It's hard to describe how helpless you feel when you have a disease, which you've had for literally decades, and all of a sudden it's going off the rails and you have no control and you honestly don't know what the heck is going on. Frankly, it's scary. I had to call in sick last week because of it, which is something I am loathe to do. And the lows are just terrifying to me. Yes, I feel bloody awful when my blood sugar hits 450, but when it's 50 I not only don't feel well, there's a very good chance that I may not feel anything ever again if I don't get it under control.  Lows mean panic, and panic when you are already unable to make decisions and trying to navigate through a mental fog just leads to more panic, which means I am unsure if I am shaking because of a low blood sugar or if I think I'm gonna pass out and end up in the hospital.

Not being able to trust the sensor, which I admit I rely on way too much, is just another worry that I have to add to my list of things to worry about. As my therapist frequently points out, I have a lot of things on my plate, and dealing with the diabetes is one thing which I shouldn't neglect. Unfortunately, I do neglect it. So maybe it's mad at me. I don't know. 

Anyway, puppies!

What's my age... again?

   You'd be surprised how many things I am ineligible for because of the diabetes. Life insurance? No way. Aflac? Some of it yes, but a lot of it no. And if I ever tried to get health insurance outside of work I expect I'd be laughed at to my face. It's pretty demoralizing.  I should just start every conversation with an insurance agent with, "I have diabetes. Thanks for your time." It would save so much effort.

    There are worse things, though. Being kicked off of your insurance for no reason other than some idiots voted for a Big Beautiful load of BS, for one thing. I cannot imagine how people are going to survive. Now that is demoralizing. Knowing that I am almost at 30 years with my workplace, and that I could retire with my full retirement in less than five years but actually can't because I need the health insurance? How much more demoralized can I get?

    If you would, follow me down a rabbit hole of despair. Or no, don't. That's a rabbit hole I don't want to go down. It's just frustrating to know that I will have to work well into my old age, even though  I will technically have enough of a retirement to live comfortably at a relatively young age, because I need health insurance, and unlike every other democratic nation health insurance in the USA is tied to your workplace.  

Here we goooo...

   In other news, I am nearing retirement age and what the actual ****? Let's switch gears entirely.

   I consider myself a Xennial, the pronunciation of which is up for debate.  I was born somewhere between the years 1964 and 1980, the years designated for Generation X, but I am close enough to a Millennial (1981-1996) that I have a lot of Millennial tendencies. Xennials have been referred to as the Goonies Generation, the Nintendo Generation, and the Oregon Trail Generation.

                                                                         Sorry not sorry.

   We Xennials are a micro generation, because you really have to have been born in a specific time period to have had an analog childhood and a digital adulthood. I watched the Challenger explode on repeat, learned how to make it to the bathroom and the kitchen in a single commercial break, saw 9/11 happen live on TV, and got my first cell phone all before I could rent a car. I was a play outside, ride my bike all over the neighborhood (sorry Mom), Muppet Babies loving kid that turned into a flannel wearing, "Clueless" quoting teenager that knew how to use a computer and make a pretty mean mixtape. Or, to put it in boyband terms, I was old enough to be all about NKOTB and still young enough to be all about *NSYNC.

Yeah, okay, I'm still all about NKOTB. 

   Boybands aside (gasp!) there is one thing about this micro generation that I have seen, and that's we believe that 1990 was twenty years ago.  For some strange reason other generations don't agree. I mean, honestly, it's like the 2010's just didn't happen for us. I forget all about them. It's not like it's been over twenty years since blink-182 released "What's My Age Again?" and the thought of being 23 was kind of a laugh. Can it?

   All this to say that I find it very hard to believe that I am even remotely close to retirement. I mean, I'm still a young adult....at least mentally. 

The Road Goes Ever On and On...

It's December. That means it's time for Christmas movies, like "Jingle Bell Love" and "Home Alone" and "Die Hard" and "The Lord of the Rings: The Fellowship of the Ring." (There's a wise old magic man with a long beard and elves. Also, some family squabbling, a lot of gift giving, and a snow storm. If that doesn't cry out Christmas then I'm not sure what else to tell you.)

https://giphy.com/gifs/BoxOfficetr-lotr-lord-of-the-rings-frodo-WNwErIxqX18xmm92UX

Beyond that, though, it is the time of year that I find it hardest to stick to any kind of diet and be a good little diabetic. I mean, peppermint bark, candy canes, panettone, Christmas cookies...it isn't as if this stuff is around all year long. Maybe it is, but I certainly don't want peppermint bark in July. Anyway, I feel like this is the time of year when I am least likely to pass on something loaded with sugar. I mean, not to put too fine a point on it, but this stuff is everywhere...

Even my desk at work. 

So why blog about this? Because I am feeling particularly bad about myself and need to get it off my chest. This isn't something that's unusual, but it isn't really warranted. I even had a good doctor's appointment yesterday- everything is trending downward. My A1c, my cholesterol, it all looks better than a year ago. I should be happy about it. But I know I can do better if I put myself on task, and, if I am brutally honest, right now the gas tank is empty. The motivation has moved on. The drive is out of gear. The flesh is weak, and the spirit is right along with it. I'm sure this is in part due to the depression I mentioned last time, and the tired I mentioned last time, but I think it's more than that. I just don't know what it is.

I've been struggling the last few years to really get into the whole "Christmas spirit" thing, in part due to all of this. This is, like, a big thing. I read A Christmas Carol by Charles Dickens every December. We are a three tree household (technically five if you count the Charlie Brown trees, which of course you should). I have stockings hung all around the entertainment nook with care.  I have a Mickey's Toon Town light up Christmas set that I spent way too much on and bought over multiple trips to Disneyland twenty years ago. I even have Disney Princess Christmas castles. I used to watch at least five or six Christmas movies as a matter of course every year. I think last year we got through one, maybe two, and both had Beverly D'Angelo in them. 

https://giphy.com/gifs/filmeditor-christmas-movies-vacation-3o6wraf3EMOKbJGkcE

                                                                             

The problem is that it just feels like work anymore. My attention span isn't what it used to be, and to sit and watch a whole movie seems like a giant waste of time that I should be doing something else, even though none of the "something else" ever gets done, even if I don't watch a movie. I seem to get paralyzed and spend even more time watching the endless stuff that shows up in my YouTube feed. I haven't even kept up on Doctor Who for the last several years. That's really saying something.  

https://giphy.com/gifs/doctorwho-doctor-who-dr-the-fires-of-pompeii-gKkyMq5EYLzxMpDIkg

Wish I was. 

I think this year I am going to make it a goal to watch at least six of my usual Christmas movies and not feel guilty about it. It's the second half of that sentence that is the trickiest, I know. I did manage one movie already, so that leaves five more. This year I got the stockings up, and the trees, but not all the ornaments, and Toon Town is still in boxes in the hall closet...though the Princess Christmas castles are still up from last year.  And quite frankly, I should feel good that I got decorated what I got decorated, and that my doctor is happy with how things are looking on the diabetes front. I need to make a concerted effort to be more Who and less Grinch, more Fred and less Scrooge pre-ghostly visits. 

And I really need to cut back on those Christmas cookies...next year. 

The Life and Times Go On

Hello there. 

It's been a while. Quite a lot of things have happened. I won't go into all of it, because a lot of the past four years have been rough, and there are some things I don't necessarily want to relive.

Have you all heard about the weight loss/ Type II diabetes medication Ozempic? I tried it, and it was not for me. I won't go into why, but I will say that for those of you for whom it works, I salute you. 

My pump got an upgrade at the beginning of 2024. It works a LOT better now, but the side effect of my diabetes being in better control is that my weight, unfortunately, is not. I am, in fact, pretty depressed about this. Of course I am a depression eater, so this vicious circle will likely be a reoccurring theme. 

We lost another of our little fur babies this year. Little Miss Rosabel was almost 14, and was just in such a bad way. I miss that little snickerdoodle. I held on too long and I feel so guilty about it. She deserved better. In the end, though, I know she isn't suffering anymore, and I'm sure she had a fantastic reunion with Bandit and Shiva over the rainbow bridge. 

Since last I posed I've gotten a second Master's degree, because one is apparently not enough and unlike most sane people I really enjoy school. If I could only find a job that was all about learning and researching and reading copious amounts of nonfiction...wouldn't that be the cat's pajamas?

So, why am I back pouring my heart out on the internet? Well, for one thing, I finished my degree so I have lots more time on my hands. Even getting more involved in library associations hasn't filled up the time I have spent the past four years working on my degree. And I miss writing. My literary creative juices are getting a little rusty just sitting there. 

I think a better question is, why did I stop? 

In addition to the whole working on another Master's degree, I was getting messaged by people I didn't want to reply to. Believe it or not, not all comments and messages on the internet are positive! I was also a little burned out, and scared of what was happening in the world- I still am, actually- and I think I needed a break. Plus, thinking about my stupid disease wasn't good for me at that time. I also stopped using Facebook, and Twitter (now X, in case you forgot), so getting the word out about new posts is basically down to if you're subscribed to this blog. 

But all is not sad. I have taken up many creative endeavors. I started to collect alcohol markers, and I even sometimes use them. I sometimes sketch, and I really like drawing and coloring. I've even taken up watercolor, though I'm not ace at it. 

Not too shabby with flowers. 

I like painting and playing with color and watching YouTubers that are more talented than I am do things that I wish I could. I have tons of sketchbooks and supplies, and even occasionally use them. The only thing really holding me back is that I am tired.

Sorry, that should have read TIRED. 

I don't know if it's a diet issue, a diabetes issue, or some other issue, but I am TIRED. I am so tired. I am even tired of looking at the word tired. Even in my journal, which is something that I have kept up on over the past few years, every single entry has some comment on how tired I am. I sleep poorly, I guess? And I spend a lot of my waking time trying to present as a relatively happy person, or at the least a person who doesn't consider hiding in her bed for a week rather than face getting up and going in to work every day. The whole "keeping up appearances" thing can drain your energy a lot.

Geez, it's been so long I don't even know how to conclude this. (Note to self, go back and reread the less traumatizing entries to see if you can get your groove back.)

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.

Welcome to Adulting. Sorry, no refunds.

Current state of mind:

Not to bore anyone with details, though, if you're reading a blog about diabetes perhaps details don't bore you, but since my last blog I have been "in the process" of getting a new pump. I'll wait while you check the date on my last blog. For those of you who wouldn't bother to do that, it was in October.

OCTOBER.

Much has happened since then. And, as Inigo Montoya once said,

My husband and I spent most of last year fostering a child that we had initially planned to adopt. That did not work out and in November the child was moved into another foster home. We also permanently closed our foster care licence because we are sure of what our family unit consists of now: us, our son, and our pup Rosabel.

In December my Dad fell, broke his leg, and has since been in and out of care dealing with issues stemming from this. It has been incredibly hard on my Mom and I feel guilty for not being more help to her.

In January my hubby had neck surgery and he is still recovering from this ongoing ordeal.

Throughout all of this, Rosabel has become increasingly less mobile because of her knee issues, and pretty soon we'll have to start researching wheelchairs for her with purchasing in mind.

Our son has restarted behavioral therapy because while he is a brilliant and loving child, his favorite word is no, he has his sensory issues, and he has got to learn how to listen before my patience is used up and all words come out as screams.

Interspersed between all of this I have been receiving bits and pieces of "new pump" materials.

• Waaay back in August, at least, Medtronic started to call me about getting a new pump because the warranty on the one that I am (still) using expired.
• At some point I told them to ahead and submit it to insurance- provided they understood I was only okay with this as long as it was 100% covered. So far I haven't gotten a bill.
• A new glucometer arrived first, because the ones I have don't "speak" with the new pump. Got this at some point in December, I think.
• The actual new pump arrived- definitely in December, because we were out of town and even though it was supposed to be signed for the UPS driver just left it in front of my house. This has been sitting unopened in my bathroom linen cupboard since it arrived.
• Less than two weeks ago I got the transmitter for the CGM. I think it was actually last Monday that I picked it up from the UPS store. It looks exactly like the old one with the exception that it has a little "G" on it.

I should probably add in here that somewhere toward the beginning of this I was told that all of the supplies for this amazing new pump that was completely covered by my insurance are coming from Puerto Rico, so there might be a delay in getting them because when this all started they'd just been hit with a hurricane, the fallout from which they are still suffering. At the time, though, it was estimated I'd be up and running by January, February at the latest.

 

So today I called Medtronic to see what was going on. After four attempts and being hung up on twice, I finally reached what my grandfather would have referred to as "a real live person" and after a few minutes of explanation I asked, "When are the sensors going to be available?"

"Oh, they're available now. We just don't have an order for you."

"...Can I put them on order?"

I have a person who is supposed to be in charge of my account, setting up training, and yadda yadda. I didn't ask for how long the sensors have been available, because it may have upset me even more. Regardless, they are now in processing- not exactly on order, because they have yet to be run through my insurance, and I'm guessing they still need to contact my doctor to have a prescription written for them since they asked for the office contact information. So we'll see when/if they arrive, and whether or not they will actually be covered by my insurance.

Frankly, I haven't been doing a stellar job of taking care of myself, and I could be doing better but I've been using all the drama in my life as a crutch as to why I haven't been. I've also been using that as a crutch as to why I haven't been following through with the physical therapy I'm supposed to be in for the arm pain I've been having for almost a year now (it's not shoulder pain, but I am definitely feeling it in the muscle below my shoulder. My range of motion has been limited of late.) I have a doctor's appointment in two weeks wherein I'm sure I'll get an earful, but I think the thing that is either going to really motivate me or have me throw my hands up in surrender is my next birthday. It's a big one and I'm not one hundred percent sure how I got here so fast. It just feels like yesterday that I was listening to Alanis on the radio and deciding which classes I was going to take my first semester in college. Where the heck did my 20's and 30's go?

Is it? Or is it a coincidence? I don't know anymore.

Truths

Being a diabetic sucks.

I know, this is a revelation. But it's true.

I was having trouble with getting insulin delivery through my pump, and I correctly assumed it was because of the large amount of scar tissue in my stomach. I have, after all, been on the insulin pump for well over 10 years, and 10 years of jabbing my tummy with infusion sets is bound to create some scaring. In addition to this, ever since I started with the continuous blood glucose testing I've rarely changed sides of my body with the infusion sets. I sleep on my right side and that often interferes with the sensor readings.

So I flipped things around, and put the insulin infusion on the left and started to use the continuous blood glucose testing sensor on the right. And now I'm having no probs with the insulin, but my sensors aren't even lasting a day because they keep giving me drastically wrong readings and having so many error messages that the pump is just throwing in the towel.

I can see why. Darn thing is broken.

For the record, that thin little piece of wire should be straight. It goes in with the help of a small needle, which should keep it from getting bent out of shape. My body did that to it. My body. Bent it. I've got so much scar tissue in my abdomen that it bent wire. I'm not surprised by this, either, because I had a little trouble getting the needle out, which means that it was probably a little bent, too.

I'll let you think about that for a second. 

What does this mean? I'm not really sure, other than I really have to find another body part to start putting my sensor and infusion sets in. If this is what happens after 10 years, and I'm not even 40 yet, how much more of myself do I have to scar up before they either find a cure (unlikely) or I die (hopefully far into the future)? 

There are ways around this. You're not supposed to insert these things into the same place every time. I don't. I use the circle method, which means I just move them around in a rotation so that no one area gets jabbed every time. But eventually you end up back where you started in a circle, and I've found that certain areas (too close to the belly button, or too close to the rib cage, for example) aren't as receptive and cause issues with delivery and sensor readings, too.  You also can't put the two things close together because the one can interfere with the other, or so I've been told.

Keep in mind Medtronic is still calling me to upgrade because my warranty expired, and I'm sure they will have two or three generations of pumps above what I've got which will address these issues. Probably. So I guess I should call and see what they are offering and maybe get a new pump even though I really don't want to.

Whoop de doo.

There and back again...

I've been lax with the diabetes thing lately. Frankly, I've got a lot of other life stuff going on right now and prioritizing hasn't always been my strongest skill. We're nearing the point where we're going to have to deal with losing Shiva, our 16 1/2 year old dog who has been with us for at least 15 of those years. After losing Bandit less than a year ago, I'm even less ready for this than I was before. We took in another foster child- older than Lani, so to say it's been an adjustment is a massive understatement. The Terrible Twos are BS, by the way, because now that Lani is three I've discovered my least favorite age for a child is the "I'm going to drag you straight into Hell and make you question whether you had sanity when you decided to become a parent Threes."

In a nutshell, things have been kinda stressful.

But that's to be expected, and I never thought that being a parent (whether it be to human children or fur babies) was always going to be sunshine and roses. Hell, even Mrs. Brady had some hard times.

Lately, though, I've been really slacking on me. And this is apparent from the fact that I've been dealing with Medtronic/insurance tralala for over a month and haven't bothered to come here to blog about my complaints until now. It's mostly because I don't have the time to do it, but also because I almost just don't care anymore. This is what life with diabetes is like. I should just get used to it.

Here's the dealio on what's goin' on:

1. Work changes our insurance (or in my case, the union does), and I forget to submit the info to the pump supplies supplier. (April 1st)
2. They send me an email to let me know they can't send me my supplies because my insurance was denied. I call and leave a message telling them everything is the same except the name of the insurance company (because that's the truth). (May 26)
3. I send an email because I don't get a call back. (May 28)
4. I get an email asking for my insurance card. I send them an email with scans of both sides. (May 30, 31)
5. Weeks pass and I don't get my supplies. 
6. I send an email as a follow-up (JUNE 28) and get three emails from three different people over the course of a few days days asking the same damned question- "Which one is your primary?" I reply to all three with the answer. I resend the scans of the cards (June 29- July 5)
7. More weeks pass. I get an email asking for 30 days of blood glucose test results...as if I keep those. (July 14)
8. I ask why I need them, and am told the insurance won't approve without them. Fine. I pull what numbers I have off of my glucometers and send them. (July 15)
9. I get a response asking me to include my name and birth date on the Excel document (July 15) because I guess it's not legit if someone else does that so I get it done and sent today. (July 16)
10. I still don't have my pump supplies.

I'd like to point out that this started in May, and it is now July, and if I weren't the kind of person who stocks up on supplies in case something happens, like, oh, I don't know, insurance and pump suppliers become completely incompetent and I have to wait weeks for my supplies, I'd be in a world of hurt right now. As it is, I'm just annoyed.

Oh, and someone from Medtronic keeps calling and emailing me to try and get me to buy a new pump because the one I have just ran out of warranty. He couldn't have timed that worse. I may have a stock pile of supplies, but I'm far more likely to shop around for a new pump company after all of this if my insurance is willing to foot the bill...which, you may remember from last time, they are NOT even if Medtronic claims they are.

Whether or not I get a new one is highly dependent on two factors: 1) How much do I owe out of pocket, and 2) How much do I want to deal with it?

The answers to these questions and more will just have to wait until next time.