Frustrations

I am so sick and tired of medical office staff not being at least competent at their jobs. I know not everyone has bad office staff- in fact several of my doctors have really efficient and knowledgeable staff. I'm not talking about any of my doctors, though.

Someone I know had a surgery postponed twice because of negligent office staff. Need a co-surgeon? Wait until last minute to contact them, and then they are unavailable. Need patient to do something (or several somethings) before the surgery? Wait until last minute to tell them. Need to fill out FMLA paperwork? Do it wrong and then mess it up even more when it is resubmitted for corrections.

And don't get me started on the actual hospital where the surgery was performed. Oh my lord, it was as if they were trying to kill the patient. The nurses didn't communicate with each other, the attending doctor refused to administer medication at previously prescribed doses, and it felt like no one knew what was going on, and didn't care, either. 

Add to all of this some seriously concerning behaviors from my son, which required multiple medication changes and emergency psychiatrist appointments, and I am pretty sure that Atlas has somehow handed me his burden of carrying the heavens.

I would use pictures and gifs for all of this, but I am honestly not feeling it. I often use humor to temper unpleasantness, but I'm too depressed and tired to muster the effort. I am worn TF out right now.  

In actual diabetes news, I will be getting a new pump here in the next few days to replace the one I currently have. Its only issue is that it is out of warranty, but who am I to turn down a new pancreas?  I'll take a picture of it while it is still shiny and share it with you all. 

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.)

100

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.