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.

I hate this blog

Seems like the only time I ever make time to come in here and do this anymore is when I have a major complaint or I'm grieving. And this sucks because this is the latter.

My father passed away last night after a months long battle with multiple infections that he kept picking up at rehabilitation facilities. Had he not had multiple myeloma (read: cancer) this may not have happened, but he did so here we are. The thing we were all focused on was getting him back on his feet after the broken hip in December, then getting over this infection, then that infection, then this other infection...all the while the cancer, which couldn't be treated until all this other crap was taken care of, was in the background silently making it harder and harder for Dad to fight back. He'd been on life support for two weeks and there was nothing more we, or he, could do. So last night we said good-bye while John Coltrane played him out in style.

I've known for a while that this was coming, but the little girl in me kept hoping that my Daddy was going to surprise everyone and pull through. That they were going to get the ventilator out of his throat and he was going to start breathing normally, that today they'd try to ease off on the pain reliever and he'd start to stir, and that after a couple days he'd be up and talking to us. I wanted so much for that to happen. But it didn't.

My Dad wasn't the easiest person to live with. He was very quiet, and spoke very little. His use of the silent treatment wouldn't seem like much considering this, but it was pretty pronounced. He was a jazz musician and didn't have a whole lot of appreciation for music that was played the same way twice (or the music I played over and over in my room!) But he was always there for me, and he always wanted what was best for me, and he loved me and I knew it. He certainly loved my son, maybe a little bit because they looked so much alike.

What can I say that I haven't said before? This sucks. It's awful. I'm broken-hearted for so many reasons. I don't know that I ever really got to know my father- he was a private person even with family.  I just scanned my Google Photos and there are so few where my Dad is the main focus of the picture. Most of the time he was just in the background, watching what was going on. I wish I had more pictures of my Dad, but the truth is being in the background was kind of how he was- always there, quietly observing, chiming in when he felt the need to which wasn't that often.

I think that's what makes this the hardest. My Dad was in (the first) rehab for his broken limb last Christmas. It was weird him not being there. The conversation level wasn't much different. The food wasn't much different. The number of presents and laughs wasn't different. But what was different is that Dad wasn't there in the background, just being there. That steadfast presence I always felt was gone. And now he's really gone and it doesn't seem real at all.

Dad wasn't big into sports like most dads. Father's Day cards were always a challenge because he never fit that stereotypical Dad mold. The thing that I really associate with my Dad is music. He played woodwinds (like, all of them), and composed, and arranged, and conducted. He gifted us his old turntable and speakers and receiver. The speakers were built for him back in the 1950's or something, and are so big I could still fit inside of one. I told him we were thinking about buying a piano and he said, "Just take ours." (To be fair, I'm pretty sure the upright was my Mom's and the baby grand we sold over 25 years ago was my Dad's, so he gave us my Mom's piano.) The books and magazines he read were all about music. He spent hours watching YouTube videos of jazz players. He was a professional musician from the time he was 15 years old. When I see musical notes, I think of my Dad.

I'm still in the numbness phase. Lots of memories floating up to the top of my consciousness. Lots of wishing I'd wake up already because my Daddy can't be gone. Lots of wishing I could hug him again and tell him I love him.

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.

No. No, No, No part 2

The second verse is as bad as the first.

As I write/wrote this our dog Shiva is/was lying next to me. She's 17 and was diagnosed with kidney disease just under a year ago. The past few months she's been going down hill- she can't get up on her own very well, can't walk in a straight line, and, like Bandit, when we come home from work she's covered in feces and urine because she can't control her bladder.

I've tried coming home from work during my lunch hour to clean her up, changing the feeding schedule so that it's less likely she'll have to potty while we're not here, and bought more rugs and blankets so that we always have something clean to put under her when she's made a mess. I'd be happy to keep doing that for as long as I have to, but the fact of the matter is...it's time.

Rare moment of stillness

You can count her ribs now. The kidney disease has really taken a toll on her and she's weighs half of what she used to. She pants a lot, even lying on the cool floor. Shiva's favorite thing in the world was to chase after a ball- she would literally do it until you got tired and stopped. I once saw her jump over our couch starting from a sitting position. While we were at Disney World many years ago a friend of ours was watching the dogs- he called to let us know that when he'd come over to feed them he'd found her on top of the kitchen island,  and she was stuck because getting up was no biggie but she couldn't figure out how to get down.  I've never met a more active dog. And now all she does is lie on her bed looking tired, emaciated, and sad. She can't even wag her tail anymore. Or maybe she just doesn't want to.

Christmas a few years ago

I hate this.

Not like, "Oh, I hate when that happens" or "I hate having to watch commercials"- I mean  I hate this.  It's heartbreaking to see her like this, but the thought that she won't be here tomorrow is one I hate even more. How can I make her keep going though? She's on pain medication twice a day, you can hear her joints creak and clack when she moves, and she's constantly barking to get up to get a drink, or eat, or pee, or just try to find a comfortable position. She can't even tell us what she'd like us to do so we have to guess, and that leaves me with the same kind of doubt that I still carry with me about Bandit.

I was listening to Billy Crystal's book Still Foolin' 'Em last week. (It's hilarious and touching and I recommend it if you haven't read it and don't mind stuff that's blue. If you don't know what that means, maybe don't get the audio book so you can skip over the colorful language...) In it he talks about saying good-bye to elderly family, and letting go, and it helped me decide that it is time to do that with Shiva.  He goes over the whole, "Who's gonna make the decision for me when the time comes?" scenario, and was stuck in it with his uncle, but his uncle passed on on his own. He just had to make the choice to not resuscitate.

I don't want Shiva to suffer but it feels so wrong to me to say she's had enough when she can't tell me that herself. But that's what we have to live with, because from what I see, she's ready.

Look at that tail go. That's one happy pup. She went through two

of those octopus toys. It had squeakers for days.

So here we are in October again, having to make that same heartbreaking decision, and frankly October can go **** off. October is when my Grandmother died, when we lost Bandit, now we're losing Shiva. It's also Halloween, the holiday I dislike the most. (I don't care for horror and I'm a diabetic- it's not exactly designed for me.) I say we skip October and go straight to November this year, not that it will make the pain go away. For fans of this rotten month, well...to each his own, I guess.

If you didn't click the link on Bandit's name above, you should. I'm feeling everything I was last year- the weirdness of scheduling the appointment, the rottenness of knowing the day and time, being sorry for so many things. I knew this was coming last year when we said good-bye to Bandit. They were only a couple months apart and being so close in age I knew we'd have to say good-bye to her soon. I was just hoping it wasn't this soon.

I was just feeding her this morning. I was just getting puppy kisses. I was just giving her a treat. She can't be gone.

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.