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).

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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.

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.

Too much stuff? Nah.

Today I (finally) opened a couple boxes of medical supplies that had arrived...sometime last week? Week before? Anyways, I opened them to add the contents to my diabetes shelf in the bathroom linen closet...where I found another unopened box of medical supplies.

It might sound as if I'm really not taking care of myself here. Let me explain...or, as Inigo would say...

I hoard medical supplies.

Okay, maybe I'd better 'esplain.

There's a reason I hoard medical supplies, and it may be that I have seen way too many Science/Discovery/History Channel shows that speak of the apocalypse (each one tends to focus on a different kind of apocalypse...we're pretty screwed if cable tv is to be believed.) Even under normal circumstances the one thing you never want to do when you are a diabetic is run out of supplies. I mean, what if I let myself get down to only one bottle of insulin and ran out? What if I only had enough blood glucose testing strips for the day? What if I ran out of pump supplies? It would not only be bad for me, but it would make the umpteen thousand dollar "pancreas I wear on my outside" kind of pointless.

I guess I could cosplay as a 1990's teen with a way cool beeper...

Let's put it this way- there are whole weeks that have gone by where I haven't worn a sensor simply because the one I was using went belly up after only a couple days, and I was barely making it until my next shipment using one every six days. Trying to make those last any way I could was kind of a nightmare. So today, getting a shipment of sensors in when I still have an unopened box of them was like...I don't know. Insurance utopia? Liberating? Yeah. Liberating.

Because when this happens now I don't have to wait five days to try it again.

I'm pretty sure that some of the nearly 20 boxes of blood glucose testing strips I have will go bad (they do have expiration dates after all) but I'd rather a box or two go bad than have to go out and buy one to get me through a few more days until my shipment comes in. Plus, I use the Contour both at home and on the go, so it's not like I don't use them at all.

There are other reasons I'm a bit of a hoarder, too. Some of it is just bad planning on the part of myself and my pump trainer, who guestimated how many pump settings I'd go through a month and guestimated pretty high. Even after a few years of getting too many I ended up glad that I was stock piling them- I was sent a bunch that were recalled, and if I'd been more accurate in my monthly order I'd have been without supplies for at least a week or two while the supplier replaced them. And now, even though I get a smaller quantity closer to what I actually use per month, I still have a nice cushion in case things ever get recalled again...or in case I stop getting supplies because I have a balance on my account no one bothered to notify me about. #thatsanotherblog

Sometimes I'm just not on the ball. I once had to get my pharmacist to call for a refill from my doctor because my current 'script ran out, and if I hadn't have stored up a couple bottles I'd have had to pay for one out of pocket to get me through the weekend...if I'd even been able to get it without a prescription, which I'm pretty sure I can't. I really don't think I can have too much insulin stored in my butter tray. Egg tray? I guess it depends on how your fridge is configured...

What else would you keep here?

Long story short (too late), I kind of hoard medical supplies, which is why when they arrive it sometimes takes me a couple weeks to open them.

The Care and Keeping of Carla...probably needs to be reevaluated...

Please forgive any spelling errors...I've got a wicked cool new keyboard that I am still getting used to and anyone who tells you they are all set up the same is quite simply wrong.

Mine lights up, for starters...

I know I've probably mentioned this before, but ever since the husband and I started fostering the Baby (whom we must now refer to as the Toddler because oh my lord do they grow up fast), the care and keeping of myself has sort of taken a back seat to everything else.

Bandit needs insulin. Dogs need fed. Husband needs to know where his wallet, phone and keys are. Baby- sorry Toddler- needs changed, and fed, and now one of our other dogs is giving me cause to worry. Before you ask, I've already had her checked for diabetes, and it's not that. I'm a boss at work (which I suppose could be taken more than one way and is true basically no matter how you interpret that, haha) so I've got work plans and staff issues and projects and other things that I deal with on a daily basis. 

Now, I know that all of this stuff is important but there is plenty of time in the day to make sure I eat, and check my blood sugar if needed, and I can take a few minutes during the day to make sure I'm alright. Usually I do. It's the bigger stuff I seem to be ignoring.

Nothing to see here...move along.

Fact of the matter is, I need to make an eye appointment because I'm over due and I know I need new glasses. I have trouble seeing with the ones I have sometimes because I opted to get new sunglasses last year and used up my insurance on that. (New frames every two years, new lenses ever year as long as they have no "additions" like, oh, I don't know...UV protection. Great plan. It's almost like not having one at all.) I also should probably go see that retina specialist again to make sure my diabetic retinopathy isn't worse.

I have an appointment next week to get an ultra sound and another thing done, and rather than give TMI I'll just say it's not on my thyroid...though now that I'm thinking about it I was supposed to get that ultra-sounded before my next endocrinologist appointment. I think. They never called and I don't even remember the last time I was at the endo, so at this point maybe I'll just forget it again. 

Also, my throat is sore but if you think I'm staying home from work tomorrow because of it you don't know me very well. For one thing, story time doesn't do itself, and for another, a little Aleve and some Halls Defense and I'll be fine.

No no no. We're not there yet.

Maybe these aren't really BIG things, but they are a few larger than average things that have started to add up, and between Toddler's birth parent visits on our weekends and the fact that I hate to take off of work for any reason if I can schedule something on a day I don't work, my free time is pretty booked already. Plus, I don't want to spend one of the days I have off to spend with the Toddler sitting in a doctor's office...now, sitting in a Doctor's TARDIS would be something completely different. Then I'd have all the time in the universe.

But I don't. So grocery shopping, cleaning, laundry, and whatever else comes up usually take precedence over calling my endocrinologist to get that ultra sound on my thyroid done (which I don't think needs to be done because it's been done before and nothing at all in my blood work or how I feel or anything has changed since he did it umpteen years ago.  It's just he has a new Physician's Assistant who won't take my word or my file's word for it. I don't want to go take some expensive health tests that don't need to be done, and will probably cost me money, and will definitely cost me time, and get off my lawn.)

A heroine of children's literature.

Eventually I will get around to dealing with all of this and I'm sure all will be fine. I just need to take a moment or two out of my lunch or on a break and call to make whatever appointments I can, and then schedule out over a few weeks so I don't overbook myself. And I will get each thing on my list taken care of...except maybe that thyroid ultra sound. That's dumb.

Diabetes Girl, meet Diabetes Dog

Yeah, you read that right. Bandit has diabetes. Poor thing gave us the scare of a lifetime this last weekend.

January 2011

For a while now my husband has not been a fan of our vet. He's thought for years that they over charge us, which they probably have been. As my experience with vets is limited  I've never had any reason to doubt where we've been going as far as care is concerned, but I told him if he wanted to get a second opinion he could if he wanted to. So since Bandit has been steadily declining the past month or two he decided it was time to do that. Bandit had bronchitis a couple months ago, and the vet had him on a ton of medication. Steroids, pain relievers, allergy meds, anxiety meds- he was taking more pills than us, but not getting better. Sure, he wasn't coughing anymore, but he was also losing weight at an alarming rate and clearly not eating. In fact, he was getting a lot worse- worse to the point that we were sure we were losing him, and taking him for a second opinion felt a little like a last ditch effort to avoid an ugly truth staring us in the face.

At first they thought he might have cancer, which broke my heart. They did a lot of blood work, and low and behold the pup's blood sugar was way out of control. Long story short (too late), he's not on pills anymore, except for the antibiotic he's on because of the pancreatitis the old vet never diagnosed and IV he was on during his four and a half day hospital stay. The other tests they did to check for cancer all came back negative, too. He very clearly has diabetes.

April 2012

Right now he's home, and we're giving him shots twice a day, and having to force feed him because after all of that his appetite is nonexistent, which is normal, especially considering how high his blood sugar was. At one point it was well over 600, so I can see why he wouldn't want to eat. He probably felt terrible, because I know if my blood sugar was that high all I'd want to do is drink the Atlantic Ocean and then maybe just die. Imagine the worst hangover you've ever had. Now double it. Would you want to eat? Hopefully in the next week or so he'll start to feel well enough that we won't have to puree his dog food and plunge it into his mouth so he'll have some nutrition.

The thing is, I feel like a prize idiot. Lethargy. Drinking excessive amounts of water. Losing weight dramatically. All things I know are a sign of diabetes, and I never put them together when I saw them in him. And then there's the fact hat he's been grossly overweight most of his life, and the last time he was in the ER the doctor saw his blood sugar was elevated and thought he may have it. When we checked with our now former vet and they redid his blood work he was in a normal range, but high normal. So I let it go, and it got bad, and then you add pancreatitis to that and it got very bad.

October 2013

Why didn't I see this coming? I mean, at that point we should have put him on a diet to lower his weight and have started to monitor his blood sugars all the fraking time, but we didn't. Now we have to nurse our poor baby back to health because he's rail thin, doesn't want to eat anything (though he does much better with the force feeding than I imagined he would), and has diafuckingbetes.

I feel so guilty.  I let him get fat. I fed him from the table. I didn't take him for walks. I didn't pay attention. And we almost lost him because of it. The good thing is that he doesn't seem to care much about the shots, and I can give those to him fairly easily right now. When his strength is back up to normal I'm hoping this stays the same, because even at  45 pounds he still puts up one hell of a fight with the force feeding!

So now we have in our home a diabetic mommy and diabetic doggy, a daddy with migraines, an older doggy who seems to be okay (thought now I'm wondering if we should take Shiva in for a physical all things considered), a Cairn terrier with hip dysplasia that has thankfully not progressed to a point where surgery is necessary, and a baby that laughs and gurgles and delights us all but keeps bringing home a head cold from daycare and passing it around to everyone. (Seriously, I just got over the last one and I'm sneezing again.)

My baby's home.

This Thanksgiving, I know what I am thankful for. I'm thankful for my husband, my family, my friends, my dogs (who are family). For Christmas this year, I don't want things. I don't want movies or toys or clothes or even my entire debt paid off (although if anyone is willing to do that I won't say no.) All I want for Christmas is for all of my family to be here, to be healthy, and to be happy, and I will consider myself a very lucky woman if this happens.

Sorted out...sort of.

*sigh*

It isn't as though I expect life to go perfectly, you know, but some days the little bumps in the road feel like New York City potholes. And it seems like the path of life was laid out by cows in the 18th century (*wink* to the Blockheads, particularly the Bravehearts.)

When I last blogged I was waiting for my insurance to approve the continuous glucose testing sensors for my pump, and I was glad that I wasn't waiting on pump supplies that were more vital because it had been two weeks since I'd requested them. They arrived on Wednesday...which, if you want to do the math, is actually 21 days from the day that I ordered them- so not two weeks, but three. That's closer to a month- on a "rush" job- than is acceptable, if you ask me. Three weeks is how long you can check a book out from the library. Three weeks is how long a track break was when I was in elementary school.

Elementary school...which is when I ordered the blasted things.

 

I'm pretty sick of the red tape, to be honest. They know I have insurance, even if they had it wrong. They've never not gotten paid. They should have put the sensors in a box the day I requested them and sent them, then taken care of the insurance submission and everything. That's good customer service. That's the kind of thing I'd expect when I was dealing with, oh, I don't know...a place that deals with life saving medical supplies. I have ordered things I didn't need from Amazon.com and gotten them the next day. But I guess I've learned my lesson- from now on, I don't wait until I'm short on diabetic supplies. I order when I've got plenty and allow for the sloooooooow process to take place.

 

I think we're all a little spoiled in this day and age when it comes to instant gratification. Amazon is a part of the problem, actually- I can order books and have them show up on my doorstep in less than a day if I'm willing to pay enough money. Maybe Amazon should start selling pump supplies. I'd be able to get them fast and cheaper. I mean, eventually Amazon will be selling us everything and we'll never have to go to a real store again, so this isn't out of the realm of possibility. In fact, it may be scarily accurate.

 

The bottom line, though, is that it all comes down to the bottom line. I look to places like Medtronic and Dexcom for life support, and they look at me like this is my high school yearbook picture:

 

I'm money, baby.

 

I've probably talked about this before, since it's one of those things that I rant about, but that whole "there's a cure, and we'll find it" line that the lovely and talented Mary Tyler Moore kept saying back in the 1980's is baloney. If there is a cure, it won't be more profitable than keeping me a diabetic, and I'm sure that Lily (they make insulin) and Medtronic (pumps) and Dexcom (blood glucose testing) and the myriad of other companies that make blood testing strips and diabetic foods and pumps and glucometers and glucose tabs and glucagon shots and this stuff

 

'Cause goodness knows I can't handle the sugar in the regular stuff

 





aren't exactly chomping at the bit to make sure that the millions of us that have diabetes suddenly don't need their products anymore. I mean, I know it sounds cynical, but I'm a capitalist at heart and even I'm like, man...a cure for diabetes would probably hurt the medical economy in a big way. What the heck would happen to totaldiabetessupply.com and all of its employees if diabetes were cured? All the engineers working on advanced pumps and monitoring and stuff would have to engineer something else. What on earth would Wilfred Brimley talk about on Liberty Medical commercials if there was no more diabeetus?

 

http://sspdapparel.storenvy.com/products/3619474-diabeetus

For goodness sake, there are even t-shirts that depend on this disease!

 

All joking aside, the medical industry is called an industry for a reason, and while all of these companies are trying to help people with diabetes they are still profiting from them, so I'm gonna stay cynical on this one until I actually see that there's a cure. In the meantime? I'll order my supplies sooner and hopefully avoid this kind of drama in the future.

Episode V: The Insurance Strikes Back

I hate to complain too much about insurance companies because honestly, most of the things that annoy me about them are things that happen on the other end of whatever process is happening- the bill was sent twice, the doctor's staff coded things wrong, whatever- but right now mine is making me frustrated.

"Frustrated"

 

I got a bill from Medtronic for several thousand dollars earlier this week, and even after calling and having them confirm that yes, a check from my insurance company did indeed arrive for the insulin pump, I will likely still owe on it- maybe as much as $1600. I also owe on sensors from earlier this year, and glucose testing strips from earlier this year, but that comes as no surprise because of this thing called a deductible, which always slams us hard at the beginning of the year.

       de-duct-i-ble (noun): You just finished paying for Christmas, and now your insurance company is going to stick you with most of the bills until you cough up that $750 they demand you pay before they will pay for anything. Happy New Year.

What's bugging me is the $200 they're trying to stick us with from the end of last year that, frankly, should be paid entirely by my insurance because I loooooooooong ago met my 2013 deductible. Hell, I loooooooong ago met my 2014 one, too, I'm just only now getting the bills for it. So now, because the nice employee at Medtronic looked at my account and could see that I had, indeed, fulfilled all of my deductible obligations as of 3 and 26 December, 2013, I must call the insurance and find out what the heck is going on with them, because there is no legitimate reason I can think of that they would not pay a single cent for test strips in December but completely pay for the exact same size order in February. It's not like I'm doing a different number of tests.

Not to over use this, but this is how I'm feeling right now.

But wait. It gets better.

Last year I was good and got in all of my annual appointments done in February. I don't particularly like going to the doctor. I'd rather go to a concert, or Disneyland, or work, even. So this year I slacked a little, and now I'm trying to make up for it, only with the new insurance I can't seem to get logged in to their members only website to see which doctors are covered. I have tried using my ID number, and my SSN, and Aetna seems to think neither of those things qualifies me as "a member." So I sit here and think, well, I guess I could spend an hour of my vacation day calling them to see if we can get this fixed, or I could blog a little and then go get my hair cut.

If you need me, I'll be at the salon.

The Science Project

Had a doctor's appointment this week. My HbA1c was 7.1, which was good, but not good enough. I mean, Tom (the nurse practitioner I work with) was thrilled...but I can do better. I don't think a 7 is gold star work.

Just a reminder on what the heck I'm talkin' about.

 

I did mention the hubs and I just started to diet and exercise, right? Hopefully by my next appointment (three months) it will be down in the 6's. 6 is actually my favorite number, so anything in the 6 range will be fine. We're shootin' for a 6.3. It won't be easy, because there are some non-diabetics out there who can't even get that score, but I've done it before and dagnab it, I'm going to do it again.

 

Also in the course of discussion, which my husband was in on because he came with me this time, were all the "future" things coming for diabetics. Like insulin pumps/ CGM that talk to your Android phone and work on their own to correct highs and lows and account for food and what not. Otherwise known as a pancreas, or, in some circles, a unicorn. Husband and Tom were both really excited...me, not so much.

 

Woo. Really, I mean it.

 

 

Don't get me wrong- that would be all good once they have it all figured out. Right now you have to wear two sensors, and use three devices I don't have (different pump, different CGM, and an Android phone, which we all know no insurance is going to cover). I know they are in the very beginning test stages and we're talking years before this is even available to people like me, but that all sounds like more trouble than it's worth. Now, my husband is a gadget guy and he may also be Batman (I've never seen them together, so it's possible.) He is also more concerned with me being healthy than anyone else on the planet that I am not blood related to. For him this all sounds great, hassles aside. For me?

 

It makes me feel like a freaking science project. And I remember not liking those much.

 

Vector-clip-art

 

It's also really hard to get excited for "what's down the pipeline" when my insurance company has been less than cooperative with getting me on CGM in the first place and the companies I've worked with have been less than stellar at making the whole "out of network" thing feasible (like, here). I mean, hello? It's pretty damn obvious that CGM and the pump alone are keeping me from ending up in the HbA1c red zone up there, because donuts and Christmas cookies and Red Vines don't just eat themselves. I'm just not looking forward to the battle ahead though it would be really nice to have a working pancreas again, even if I do have to wear it in my pocket.

 

Arthur Ashe is quoted as saying, "Start where you are. Use what you have. Do what you can." I find these words pretty inspiring, because a lot of what I have to do with diabetes is pretty much that. And Walt Disney is famous for saying, "It's kind of fun to do the impossible."  I feel like I'm always trying to do that, too. I don't have much of a choice though, do I?

 

Again, Phil and Lem put it succinctly. 

 

So I will keep starting where I am, using what I have and doing what I can until some company manages to do the impossible and I get my electronic pancreas, and if I have to deal with insurance companies being a pain in the arse and having to look like Batman with devices all up in my pockets and on my belt I'll do that, too.

 

Because I have to.

 



Musings

I'm waiting for Star Wars: The Old Republic to finish updating...considering how long it seems to be taking, and the fact that Pinterest doesn't want to work for me, I thought I'd blog. Of course, Google is being a pain in the butt and the Blogger site isn't working as it should, either, so maybe this will be a loss too.

Sorry if I'm a little downer today, but I'm still reeling from Paul Walker's death, which undoubtedly you've heard about even if you're not a fan because it's pretty much a given that if a guy who was in the "Fast and Furious" franchise dies in a car accident, the news media is going to have a field day writing about it. Frankly, this is only adding to and not the lone source of my melancholy, but it's one of those things that just reminds you life is short and those you love may not be here tomorrow, or even later tonight, and it's making me upset because it is one more thing I have absolutely zero control over. I'm not as upset about Paul Walker as I am from thinking that it could be my husband wrapped around a tree someday, and there's not a damn thing I can do to stop that from happening... I hate when I get the mean reds like this. Holly Golightly could swing by Tiffany's, but my go-to happy place isn't somewhere you can just visit for free.

Though it is really pretty at Christmastime...

I know I've been dealing with depression stuff, and I don't always put in here what's making me depressed (because some things aren't relevant or I just don't want to share), but something about this last few months has been gettin' me down. It's kind of funny, actually, because my husband told me today one of our co-workers has a handout from a "motivational" presentation I did a couple months ago hanging at her desk, and she thinks it's awesome and she looks at it everyday for inspiration. I'm way flattered, and glad to know that "do as I say don't do as I do" still works, because lately I'll just start to cry at the drop of a hat.

I feel a little overwhelmed is all. We'll get through it.

On another note, and totally switching gears, I realized the other day just how much waste I produce. Not that we don't recycle (we do), and not that I don't try to reuse things (I do), but diabetes wise...there's a lot. I mean, I knew the blood testing strips and things added up, but then I changed my pump setting at the same time that I changed my CGM sensor setting...and just wow.

I didn't think to take a picture until after I'd thrown a bunch away, too.

That's a wet erase marker in the upper left hand corner. Typical pen size, about five inches long. All of that is medical garbage. Plastic pouches, needles, alcohol wipes, old settings...every six days I toss out that much trash. Every three days it's half of that. And this doesn't include the test strips for every blood test I do (2-3 a day), the tissues I throw out that I use to stop my poor stabbed fingers from bleeding, or the empty test strip bottles, the boxes that the pump and CGM supplies come in, or the boxes that those boxes come in. It's a massive amount of non-reusable garbage that I throw away every single day.

It just kind of blew my mind. I mean, multiply this out by the number of years I've been using the pump (pushing ten) and the number of years I've been using CGM therapy (I think two? Not sure anymore), and then add in all the years yet to come...holy crap! And the thousands and thousands of needles I used before this? And the thousands and thousands of test strips and alcohol wipes I've gone through?

I had a doctor's appointment yesterday, and he wasn't too broken up over my HbA1c...it was a 7.2, which I know is relatively good but for me feels like utter failure. That is definitely adding to my melancholy. I know I can do better. The rest of my blood work was good, too. Cholesterol is down, blood pressure okay...Even when I skip out on exercise, eating right, and using the CGM I end up doing all right. Which only goes to prove I can do better if I actually try. And of course I want to try right in the middle of Christmas. (It's like I'm setting myself up for failure. Eesh.)

Anyway, that's my musings for you. I start off thinking one thing and then the mind wanders someplace else entirely. Star Wars finally finished updating and it only took an hour. Now I don't even feel like playing, but if I don't then it will be a little like I wasted an hour...of course I won't have to update the next time I play, so there's that. And I did get a blog written, even though Google was trying to thwart me at every turn. Which means, in spite of my negativity this evening...

Carla wins.

Didn't See That Coming

You know what's really interesting? When you make a choice and then before you get to act on it another option is presented to you to choose from which completely changes the direction you're going in. For example, today I decided I was DONE with CGM. I can't go back to using the Dexcom because I don't have thousands of dollars lying around looking for something to be spent on and I can't stand the thought of having to stick myself with the (insert several expletives here) sensors my insurance will cover. I've been sensor free all day, and for the most part my blood sugar has been relatively good. (Not great, but good.) I've also done more finger sticks today than I have in a long, long time.

I can almost hear the little bastards laughing at me.

 

But then I got to work and I had more choices than "use what the insurance will pay for even though it's kinda crap" and "go without." For behold! Medtronic has been calling me to upgrade me (for free) to their new and improved pump! I guess when I got this one in June they opted me in for a free upgrade once the new system was ready for go time. And it's go time.

 

I hesitate to be excited about this "new and improved" pump. For one thing, it's not FDA approved for use with pregnant women. I am not pregnant, but hearing that sort of thing makes me cock my head to the side like my dog and stare at the phone in confusion when the person on the other end of the call informs me of it. (Apparently the FDA requires extensive testing even if one little thing- such as a human being growing inside of you- is different than status quo, so it is likely that eventually it will be approved...I guess. I'm just going to defer to my husband, who has a lot of medical industry knowledge, and nod my head in pretend understanding.)

 

We have no idea what you're talking about.

 

Anyway, after a little research and waiting on hold for almost half an hour before talking to someone at Metronic, I decide, what the hell? It's free, it's new, and if the Medtronic website is to be believed, it's got some features that I do not currently have that I would like (#4) and some things about it seem to have been improved upon (#1-3):

 

1) the sensors are smaller (shorter and not as wide), which means I won't have to jab a giant, thick needle into my stomach every three days,

 

2) the sensors last up to six days instead of three, which is already an improvement even if the sensor itself wasn't smaller,

 

3) the new sensors are apparently 31% more accurate, which is a hallelujah moment right there,

 

4) with this higher accuracy level, it also comes with an automatic shut-off ("thresh suspend") in case I ignore a hypoglycemia (low blood sugar) alert...which I admit I do when it's the middle of the night and my pump is beeping at me. For it to shut off insulin delivery on its own and monitor when it should come back on is like...I don't know. Jesus like. Miraculous. Like it's a pancreas or something.

 

and 5) with the exception of the new and improved sensors it still uses all of the supplies I've got stored away.

 

So there are plenty of good reasons to take a chance on this new device. Hell, it looks exactly like the one I have now and the two I had before this one. It's not like you'll be able to tell by looking at me that I've got a new pump (though I am seriously considering going with blue instead of black this time. I don't know why. Maybe I just don't care if it matches my work clothing anymore.)

 

I'm thinkin' of somethin' blu-uuuuuue...

 



I've been burned in the past by this CGM stuff before, though. I admit the Dex meter did produce results, but it made me mental. And while I appreciate the price point of the Revel, I hate those sensors. I mean, I hate them. I hate them the way a Steeler fan hates the Browns or the Ravens, the way a Dodger fan hates the Giants, the way a Red Sox fan hates the Yankees and vice versa. We're taking epic sports rivalry hatred here, folks. Just looking at those sensors fills me with trepidation and revulsion...and this is after I figured out how to put the damn things in properly.

 

It's midnight-thirty as I write this so there will be no spell checking tonight, folks. I'll just schedule this to post in the morning and leave you with this thought...

 

Do we really need a sequel to Beetlejuice? Only if they bring back the cartoon...

 

 

Which came on right before these guys every Saturday morning...one of whom is wearing Beetlejuice inspired attire about 15 seconds in...

 

 

 

And they were on right before an hour of this:

 

 

Clearly I remember my Saturday mornings in 1990 very fondly. 

To Boldly Go...Back to the Drawing Board

*sigh*

The CGM Saga continues. When we last met, our heroine was trying to objectively compare the two continuous glucose monitors at her disposal...

Today she wishes she'd never heard of either of them.

I went through three sensors and five needle pokes today to get one of those damn things inserted. It brought me to tears.- not because it hurt but because it was so frustrating. The hurt comes later. Have I shown you what happened last time it took me more than one merciful needle sticking to get one of these things working?

My tummy, ladies and gentlemen. I've seen UFC fighters in better shape.

Even if I had the body for it, I would never wear a bikini, that's for sure. The bruising and tissue damage is unreal considering I've been poking myself with a needle to insert my pump settings for eight years with no freaking problems. Same company, completely different technology.

Now, as my husband sweetly pointed out while he was consoling me this morning, CGM is kinda new. I'm on the cutting edge here, and they haven't worked out the issues that are sure to arise when technology is new. I mean, when cell phones were new there wasn't great coverage, calls were dropped all the time, and it was easy to break a phone if you dropped it- but that was over twenty years ago. Things are much improved today.

So what you're saying is I'm screwed.

 

I can't very well wait for the technology to get better, so I have to make do with what I've got to work with, but I am not sure how much longer I can emotionally take this. Since the new insurance kicked in we're thinking maybe now they'll cover the Dex company, though so far the only differences I've found in the coverage are that more things are not covered. Still, it can't hurt to call and find out, right? Maybe they'll not only cover it, but they'll cover the new Dex meter, which has a color screen. Ooooh. It's also smaller...which means I'd just lose it more but as long as it takes less sharp jabs to my tummy, I'll manage. We'll see how that goes. I've already dealt with one incredibly frustrating thing this morning, so maybe calling the insurance company should wait until later.

 

In the meantime, I will do my best to keep it together. My husband making amusing puns as he installs the new toilet helps ("I knew this project was going to tank" is my current favorite). And of course, I've got music. New Kids on the Block, Maroon 5, Bing and Frank....songs from my favorite musicals. Oh, and of course there's the classics.

 

 

Updating the Upgrades

Arrrr, me mateys. 'Tis International Talk Like a Pirate day, and also me little mutt Rosabel's birthday. Truth be told, a mutt she is not, but a purebred Cairn terror, who sets herself upon the ankles of the unsuspecting and trips those usually sure of foot.

She be a well read pup, too, though a wee bit more scraggy bearded these days.

(Also, the book she be readin' be available from Amazon.com, if'n ye be interested.)

 

Okay, I could go on but I won't (at least with the shameless self promotion.)

I've been using the Medtronic/ Minimed Paradigm Revel (aka, my tricked out insulin pump with CGM) for about three months now, and I think that I have given it a long enough run to be able to adequately, and even objectively, compare it to the Dexcom CGM that it replaced....yeah, they both kind of have issues.

Let's back up to this morning. I have been on the verge of a breakdown for a couple weeks now. First my car goes engine up, then the insurance is changed on us in a very bold and seemingly underhanded way, then my husband's truck pulls the same engine trick my car did, and then our toilet cracks like it was made out of very cheap porcelain. Add this to the various odds and ends that have been piling up, and I was due. So this morning when I was changing my sensor and started to bleed I had a total meltdown.

Who's crazy now?

I know what you're thinking. "You have been sticking yourself with needles for decades. You check your blood sugar at least two or three times a day. You have two doohickeys in your abdomen at all times. What's a little blood? A little blood is nothing!"  And you're right, but I'm not talking about a little blood. I was gushing. Maybe I haven't mentioned this, but I freak out at the sight of more than a little drop of blood and we are not taking about a little drop here. Anyway, I started to cry, which freaked out my husband, and then I said, "I never thought I'd say this, but I miss my Dex meter," which may have freaked him out even more because I really hated that thing.

However, it's been a couple months since I switched devices, and I think it's a good time to lay out the pros and cons of each one, even though I don't think that either has shown an overall clear superiority.

Let's start with the Dex. As a refresher, here's what it looks like:

Not one of my better days, this.

 

Pros (and yes there are some): 1) it was overall more accurate, 2) the software was easy to use and understand, which made making adjustments to my insulin settings easy, 3) one sensor lasted for 7-10 days, and 4) I never had problems inserting the sensor.

 

Cons: 1) I lost it all the damn time because it just clipped onto a pocket (or fell out of them more often than not), 2) Dexcom's customer service left much to be desired (I think taking $1600 out of someone's checking account without contacting them first and then taking three weeks to put it back counts as some of the worst customer service ever, and I've had waitresses spill beer on me.), 3) My insurance didn't cover the sensors, hence the $1600 co-pay they didn't clear with me first, 4) the sensors were kinda big and 5) each sensor came with its own plastic inserter, so I was throwing out a lot of medical waste.

 

And now let's look at the Revel:

 

Imagine a little sensor icon next to the clock, and this is it.

 

Pros: 1) It's one device instead of two, so I don't lose it, 2) It's covered by my insurance, 3.) If I need to make an out-of-the-ordinary $5 co-pay Medtronic calls my house and my cell phone, leaves me a message, and doesn't ship until I call back and confirm it is okay. In other words, they have excellent customer service, 4) Because it's all in one, the CGM actually works with my pump which makes it faster and easier to take care of highs and lows, and 5) Each sensor can be inserted using a reusable device, so there's less waste.

 

Cons: 1)I have no idea how the software works because it doesn't work with Windows 8, and that's what I've got on my laptop, 2) each sensor only lasts 3-4 days, so I'm sticking myself more often, 3) I sometimes have to stick myself 2-3 times and use more than one sensor to actually get one working, which means I'm sticking myself way more often and 4) It's not as accurate as the Dexcom. And 5) it beeps ALL THE BLEEPING TIME...but I set it to do that, so it's not really a con.

 

When it comes to my health I know I should be looking more at how these devices affect my health. And I think, honestly, I was in better health with the Dexcom. However, the bottom line is actually the bottom line, and there's no way that I, or anyone I know, can afford a $1600 co-payment for sensors every three months. And as irritating as the constant sensor replacement is, it was far more frustrating to lose a device that cost four thousand dollars because it wouldn't stay in my pocket a couple times a week

 

To be blunt, the Medtronic Revel is better than nothing, and overall less irritating than the Dexcom, but if I could afford to use the Dexcom, I probably still would. I guess.

 

So there ye have it, me hearties. No true consensus to be found amongst the crew, and we're still floatin' upon the Seas at Her whim, with nawt e'en a breeze to lead us to our fates. It's as if we be cursed to sail on to the horizon without a map and compass...

 

Okay, I'll really stop now....maybe.

 



 

 

 

Hoarders

I mentioned in my last post that I have a rather impressive blood testing kit collection. It doesn't really do much...just sits there taking up space in the bathroom linen closet because really, where else would you keep medical supplies?

Well, obviously insulin goes in the egg tray. Everyone knows that!

 

I don't know what possesses me to keep those old things, really. It's certainly not as if I'm ever going to use them again. Like I said before, you can't even get test strips for most of them. And as far as I know there isn't a trade in program for them, either. In fact, at least two of the ones I have were sent to me free by Medtronic to use with my pump with the understanding that I don't actually have to use them, and one or two of them I got from my insurance company with the understanding that this was what they would cover so don't use anything else. So they're a little like Kindles- given away in a effort to make you spend money on the accompanying stuff.

 

The real reason I don't know why I keep those damn things is I really don't have the space for them. Let's go over what's in the linen closet. 1) Glucose testing strips, 2) Pump supplies, 3) Sensors for the CGM, 4) Linens. Obviously there's not really room for 5) Old glucometers I will never use again.

 

 

Exhibit A

 

If you look carefully at the bottom right hand of that picture you'll see in the back I also have two pumps that I no longer use sitting there "just in case" along with the museum grade glucometers.

 

 

Or I could just take a better picture.

 

Honestly, that's a lot of stuff there just to keep me alive. I'd show you the rest of the linen closet, but all the linens are crammed in there real good because there's not a whole lot of room for them, given that my diabetes supplies take up this much space. Usually I also have boxes and boxes of supplies that I haven't even unpacked stacked in there taking up three times the space, too. I don't go through all of this in a month, you know. Given the track record with my insurance company sucking as much as it does I tend to keep months of supplies on hand just in case they decide to stop paying for them in an effort to lessen their costs. The only thing I don't have that much back-up of is the insulin, which only costs $70 a bottle and is much cheaper than the pump supplies. Still, I have a three month supply of that on hand at any given time. I'm not sure how much I've got in the linen closet, though. Several months worth, at least.

 

Not usually, anyway.

 

So all of this begs the question...why am I holding in to things I don't need, that I know I won't ever use again, and that I don't really have the room for again?

 

Beats the hell outta me. Maybe I'm just a hoarder.