A few words for care givers

We see you.

We see you struggle to act like everything is okay when deep inside you're worried about whether we took our meds on time, or at all. You cook, and clean, and regulate kids and pets, and fix computers and pay bills and run the house as well as hold down a full time job so we are sure to have enough insurance to pay for those meds we sometimes forget to take.  You encourage us when you feel like the world is on your shoulders and you just want to get out from under it. You smile when you want to cry because you know it makes it easier for us.

We see you fight against resentment that you have to do everything, and anger that we're in this situation, and we see you drown in frustration only to shake it off and give out hugs and make sure lunch is packed. We see you roll your eyes when we snap at you for trying to make us take care of ourselves. We see that you're scared because you don't know how long you can keep doing this and you know you may have to do it forever because this stupid disease isn't going anywhere anytime soon.

We see you deal with guilt because sometimes you do feel resentful, particularly when we're being obstinate. We see you deal with self-doubt. You wonder if you're doing enough. You want to ask for help but don't know how, or who to ask. We aren't getting better and you take that personally, as if it's something you have control over even though you know you don't.

We see you feel alone. You're taking care of us, and we don't feel well enough to go out the way we'd like. When you do go out with friends and leave us at home we know you're wondering if we're okay. Did we remember to check our blood sugar? Take our heart medication? Or worse, did we accidentally take those two meds together that we're not supposed to and now we've passed out on the kitchen floor? Maybe it's better to stay in after all.

We see it, and we don't say thank you enough, so thank you. Thank you for being the one we lean on when our disease gets the upper hand. Thank you for staying with us even when we're difficult and take our own fear and frustration out on you. Thank you for taking care of us when you could leave. Thank you for not putting yourself first instead- which you should do sometimes.

We love you. We appreciate you. And we wouldn't be here without you.

November is National Diabetes Awareness Month, but it's also National Family Caregivers Month, and while that seems to indicate caring for the elderly I call BS. My husband takes care of me, and he worries about all of those things because of my diabetes. If my sensor isn't working right at night he's worried I won't wake up. He worries about my A1C. He gets me juice when I snap at him because chances are my blood sugar is 52. And I appreciate him for doing it, and I know it isn't easy.

So here's to the people who take care of us, whether we are elderly and need a hand, or have some chronic disease that needs to be monitored, or we have something else that means we need the extra support. You're our heroes.

Back on the wagon...again

Why can't I just stay on this damn thing? Getting back on it is hard.

I got a Garmin step thingy for Christmas, and I used it pretty regularly for a while. I stopped using it over the summer for two reasons. First, I tended to hit about 6500 steps a day  regardless of what day it was or what I was doing and I didn't need a reminder that I wasn't making that 10K goal and second, it's hot in the summer and wearing a plastic wristband is uncomfortable enough without adding summer sweat and a wrist band tan to that.

But it's "fall" now (pumpkin everything means fall even if it's still 95 degrees outside), and I do need to get my A1c down, so I strapped it back on and connected it to My Fitness Pal, and as of today I am trying to get back on the fitness wagon. Counting steps, counting calories, counting the days until my designated cheater day...

Why???

I don't want to be overweight. I'd like to not go blind. I would appreciate having the energy to chase an 18 month old around and not have to stop and take a breath or a break all the time. I'd really like to feel good and feel good about myself.

That's really the deeper reason. I've been kind of depressed lately. My pants feel too tight, and not in a  good way. I have no control over the whiny diabetic dog, or the in-pain husband, or the foster situation. I have a little more control over things at work, but even there I'm bound by rules and a boss and an administration that's still in the middle of constructing our strategic plan. The one thing I do have control over is myself, and lately I've let myself get out of control.

Time to stop that crap.

I miss carbs. Do breaded vegetables count?

I'm starting off small...fifteen minutes of stationary bike riding three times a week is small. Trying to make sure I hit 7K steps a day is small. Trying to stay close to my allotted caloric intake and not hating myself for going over it is not as small, but still smaller than expecting perfection right out the gate. I'm on day one of this and so far I've done well. Maybe I'll let next Sunday be my cheater day. We shall see how well I do this week... and this week I'm off several days for varied reasons so it will not be a regular week against which to measure things, which is good, because it's days when I'm home that I'm less likely to get off my butt and more likely to be doing things like this

At least my right index finer is getting exercise.

The thing is, now I've got to be watching my blood sugars more than ever because one fifteen minute stint on the bike will give me a day of lows. Could I alter my basal rates to compensate? Sure, if I had a habit of exercising going. But I don't yet- YET- so I don't want to go in and make adjustments until I'm at a level where I know I'll need them all the time. Which means I'll need to constantly monitor my sensor readings else I'll be imbibing so much regular Coke to keep from passing out that all the exercise will be mute. 

Frustration level: Fax Machine.

But since the diabetes is part of the reason I need to do this, I need to do this. And I know I've said I need to do this many times in the past, and those times have not gone so well. The nice thing is that I can keep trying and hope that eventually I'll get myself in some good habits. So here we go again.

Or, to paraphrase the words of Joey McIntyre, heeeeeere weeeeeeee goooooo agaaaain...I'm a gal on a mission, baby,

I'm lookin' at YOU, 5.9

Sense and Sensorability

Heads up- this might be a good blog to skip if you're squeamish.

I've been using this new Medtronic Enlite pump now for...well, I'm done looking through old blog posts trying to figure it out. It's been a year at least. And I haven't been complaining about it much.

Charles and Eddie, "Would I Lie to You"

If you recognize this song, congratulations. You made it out of the 1990's.

Okay, so I complain about it. But I usually only complain about the incessant, unwavering, unrelenting beeping it does. What I don't complain about is how hard it is to put the sensors in because unlike the Enlite's predecessor, the Revel, it wasn't designed by Torquemada to convince Jews to convert. It's a fairly simple device to insert and I've become pretty good at putting the sensors in. Not only that, they actually last the six days that Medtronic touts, also unlike the Revel, which means I'm sticking myself less than I could be.

I've got the whole thing down to a fail-proof system, actually. Sunday I put in a new sensor. By Monday afternoon it's pluggin' away and pretty damn accurate (something else the Revel wasn't!) Saturday morning it shuts off and I charge the transmitter that sends the blood glucose readings to my pump so that it's ready to be put back on Sunday morning. Easy peasy!

Well, yeah...usually. Very rarely they go in wrong...

My stomach bent that wire-needle combination there, and it was in my stomach when I was trying to pull the needle out. Sucker was so bent it wasn't budging. The needle would only come part way out so I had to waste the whole sensor. When I pulled it out it didn't hurt, but I was kind of queasy for a few minutes after tugging on it and not being able to get it to work right. Nothing like having a bent needle stuck in your stomach to really set your day off on a good note. /sarcasm

I actually have more trouble with the insulin infusion sets, to be honest. They go in wrong all the time, and I'm left with bruises on occasion, too. And I'd love it if I only had to change those every six days instead of every 3-4. And sometimes I'll hit a spot in just the wrong way and I'll start to bleed, and I'm both completely grossed out and fascinated by it. 

No wonder I was having trouble getting insulin to go in- the tube was clogged!

But I digress. I was talking about the sensors.

Frankly, the fact that my hemoglobin A1c jumped from 6.8 to 7.3 in four months is probably an indication of two things- having a toddler makes me too tired to exercise and being annoyed with my noisy sensor to the point of silencing it for hours at a time is not a good thing. I really like sleep, though, and I get more of it when I'm not waking up every two hours to acknowledge that my blood sugar is either possibly maybe going to hit 170 or possibly maybe going to drop to 80. But getting a good night's sleep is no excuse for this kind of thing:

4:34 pm. Not the middle of the night.

Yeah, that was three hours in the high two hundreds that I should have addressed earlier. (To be fair, those little black marks at the bottom are times I gave myself insulin.) So I won't censor my sensor during the day anymore and I'll try not to complain too much about the incessant, unwavering, unrelenting beeping, because the beeping is what's helping me keep my blood sugars in check which can only be a good thing in the long run.

Also, I've received a request to note that my husband is handsome, and smart, and wise, and modest, but I won't do that because it's pandering to a very small demographic.

Seeing the Unseen

Sounds like a paranormal TV show on one of those cable channels that you can never remember the name of, huh? Seeing the Unseen. I'm not talking about ghosts, though what I am talking about is definitely scarier than things that go bump in the night.

I'm talking about not seeing how sick, tired, in pain, or ill some people are because the thing that makes them sick, tired, in pain and ill isn't obvious. Right now you'd never be able to tell I'm a diabetic because I've got my pump tucked away someplace you'd never see it, even if you were looking for it. I've got no physical deformity that identifies me as someone with whom you must be Americans with Disabilities Act (ADA) compliant.  In fact, many people are generally surprised to learn that I am a diabetic, as if there should have been some kind of obvious, clear-as-day sign that I'm not normal. But man do I feel like crap today.

Wait, doesn't mal mean bad, or something?

My husband suffers from frequent migraines, but he tries very hard to hide his pain from everyone. I work with someone who has fibromyalgia, and to just look at her gives you no indication of how much she often hurts. A very good friend of mine has Lupus, but on her good days you'd never know she is as ill as she is because you just can't see it. There is a long list of  chronic diseases that hide in plain sight, and hide in plain sight so well that many people over look how serious they are.

I've been thinking about this for a while, and I want to be clear that I'm not comparing diabetes, something which I think is fairly livable, to any of these other conditions based on "how much one suffers" with whatever they have.  But the two major similarities between them and other diseases like them are that 1) You can't tell we've got it just by looking at us and 2) Trying to appear normal is exhausting, because believe it or not pretending to be okay can take a lot out of a person.

Creative Commons / Flickr: qjakeTired usually isn't this cute

When I was a kid everyone knew I had diabetes. It was one of the first things everyone in class learned. "Carla has diabetes. If she falls asleep on her desk let the teacher know." I sometimes used it to get attention, and never more than in third grade when my mom got the whole school involved in the Juvenile Diabetes Foundation (now Juvenile Diabetes Research Foundation) annual walk-a-thon. I milked that for weeks. But I was keenly aware even as a child that diabetes made me different. I was the only kindergartner with an alarm clock in class that went off when it was time to eat a snack. I was the only one in my class- the only one in my entire grade- that left class a little early to go check her blood sugar and give herself a shot before lunch. And I was the only one who woke up in the nurse's office at some point during the first couple weeks of school because my blood sugar crashed and I passed out in class.

So eventually I stopped drawing attention to it, because once I hit junior high all I wanted was to be like everyone else. I wanted to eat pizza and drink Coke- not diet Coke. I wanted to eat cookies and not miss the last five minutes of whatever class I had right before lunch. I wanted to ride the bus to school and be allowed to sleep over at my friends' houses without my little sister tagging along "just in case." And I sure as hell didn't want to be a human pin cushion anymore. I didn't care for being called Diabetes Girl, either.

I spent years having to tell people about my diabetes right after telling them my name, and like I've said before it defined who I was when I was a kid. In spite of disliking the moniker, I was Diabetes Girl. My Sophomore year of high school the debate team signed up to help out at the JDF Walk-a-thon, and I'd kept my familiarity with the whole shebang under wraps. At some point however, one of my team mates found out, and I can still hear him in my head, talking to his mom who was one of the people coordinating the event: "Carla's one of the people we're helping!"

Well, really.

I won't get into my cynical rant on how little I feel people are helped by things like the JDF or JDRF when drug companies are making bank on us sickies and probably suppressing all research that would enable me to lead an Islets of Langerhans filled life without needles. (Besides, I've probably done it before.) The reason that this moment has stuck out in my memory is that it was just a nasty reminder that I was different in a situation where I wanted to be the same, and now people who had looked at me like I was normal now looked at me like I was someone who needed "helped."

But that was all in the past right?

Even if you take people knowing/not knowing I have diabetes out of the equation, there are just days I feel like crap and don't want to let on. I mean, I'll complain sometimes, but there are many days I just plaster a smile on my face and try to ignore the fact that my blood sugar won't go above 65 or below 325 or whatever. And there are days I'll pretend that I don't want to cry every time I give insulin because my setting went in wrong that morning and it hurts like someone stabbed me in the side. And I can't even begin to tell you how many times I've come in to work when I should have stayed home because the pump beeped all night long and I've gotten little to no sleep. What would be the point?

I guess the point is that even now I want to appear normal. And if I'm bone tired at the end of some days, then those who have it worse than me, and have a harder time appearing "normal" every day, have got to be even more bone tired. And that can be frustrating for their families, who actually get to see the pain and fatigue that is carefully shielded from the rest of the world. I had a conversation with my mom recently wherein she was surprised that my husband had been fighting a major migraine for a few days because he'd been over at my parents' house the night before and had seemed fine. He hides his pain from people well, and sometimes I wonder if people think I'm lying when I tell them how much he always hurts. They probably think he's exaggerating when he tells people how tired I am, too, because I spent most of my energy trying to appear healthy when I feel anything but.

I had to scan through a year and a half of Facebook posts to find this, and while diabetes isn't listed, that "etc" covers a lot of ground:

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.

Growing Up...I'm against it.

As I sit here in my living room this morning with BabyFirst TV playing silently as Baby sleeps, I find I have come to a decision.

I was never a big Will and Grace fan, but this picture my husband put on my Facebook page today accurately sums up how I've been feeling the last two weeks. Being an adult is hard. It's sometimes fun because you have the money and the decision making power, but it will never be as good as being a kid was. Speaking of kids, I went to see New Kids on the Block less than a week ago and for two glorious hours I was 12 again. I was singing along, and dancing, and screaming, and laughing, and the weight of everything in my life that has been pressing down on me was just gone for two straight hours. It really was like being 12 again.

I miss being 12.

When I was 12 everything was either black or white. Good or Evil. Right or Wrong. Now everything is shades of gray and Davy Jones isn't even with us anymore.

I don't like paying bills and my inbox is mostly filled with emails labeled BILLS. I don't like having to clean my house but if my husband and I don't do it no one else will. I don't like laundry or dirty dishes, but they stack up if you ignore them. Nor do I like having to stay home from work when Baby isn't feeling well, but the daycare insists that he be well when we bring him even though that's where he gets sick. I don't like going to the doctor whether it's for me or Baby or one of the dogs, but not going leads to bigger problems I don't like even more. I don't like that I'm tired most of the time because Bandit whines to get up at least four or five times a night and my pump usually beeps at me as if that's the only thing it is meant to do so I don't sleep well, even with the new mattress we got yesterday that so far has lived up to the company's promises. I guess that's what coffee is for.

Being an adult means having responsibilities. Some of those are good- like being the boss. But responsibilities can suck- also like being the boss. Sometimes I want the buck to stop on my desk, and sometimes I want it to bypass my desk entirely. Alas, you cannot always pick and choose what you are responsible for and what you can leave for someone else to deal with. 

I miss Phil and Lem

If I had no responsibilities, I could be in Disneyland right now instead of home taking a sick day. Or I could fly across the county and go see NKOTB again this summer with some of my friends instead of going to San Fran to do work stuff. Or I could sit at home all day every day and actually blog or write another book or exercise and have time to pamper myself and relax more and stress less. 

Uh oh, Baby is waking up...must type faster...

I'm not saying that being an adult is all bad, or that I'm regretting the choices I've made that have led to the responsibilities I have. I'm actually happy with my life. I'm even in pretty good shape health wise. My last HbA1c was only .1 higher than the time before and I thought I did a rotten job of taking care of myself the past four months. Overall things are good. But the dogs need their shots, I need to go to the eye doctor, my husband has been sick, Baby isn't feeling well, we have a couple BIG projects going on at work that I'm not there to deal with and my inbox is still full of bills that are due in the next couple weeks. 

I'm just saying that I need more time to be 12.

Blargh. No really.

So last night I either ate something that I shouldn't have or caught a 24 hour bug of some kind, because I was nauseated all night. All. Night. In fact, I was feeling it on my way home from work. NBD, right? Took some Pepto, watched The Voice with the hubs and took a night off of Star Wars: The Old Republic and should be right as rain in the morning. I had a lot of plans for today, too,  because I was going in to work late to make up for going to a meeting on my day off. I haven't had a haircut in months and I could use some new work clothes, but never have time to go out and do those things, so having a couple extra hours in the middle of the week would be awesome.

Future's so bright I gotta wear shades, right?

I miss Scrubs.

 

I neglected to mention that my blood sugar was low all last night, too. I can say from previous experiences that being low and nauseated at the same time is the weirdest dichotomy. You want to eat all the things at the same time you never want to eat anything again. But the hubs got some food in me and we got the baby to bed and went to sleep a little early, and I hoped that by this morning I'd feel fine.

 

Fast forward to two in the morning and I was in the bathroom throwing up all of...well, all of nothing, because there was nothing in my stomach. It was mostly bile, and all disgusting, and I hated every second of it. When I was done I felt even worse than I had before I'd woken up with that, "You know, the sooner you get your butt out of bed and get your head over the toilet the better" feeling. And of course Bandit started whining as soon as I'd managed to make it back to bed. No way was I going to take care of the dog feeling like I was so the best I could do was wake up the husband and get him to do it.

 

 

 

Long story short it was a rotten night and I got none of the things I was planning on doing today done.

 

The day after illness like this I always feel like someone punched me several times. I slept most of today and didn't go into work at all. I got up early, got the baby ready for daycare while the husband got ready for work, fed the dogs, and as soon as everyone was on their way out the door or to the food bowl I set the alarm on my phone and went to bed. I got up after an hour, gave Bandit his insulin, and went back to bed for the rest of the morning. I ate lunch, slept some more, and then the family was home and it was dinner time.

 

I've managed to keep everything I've eaten today down, but I'm still tired. I mean, I may go to bed after posting this tired. Being sick always takes so much out of me. And I'm still not sure what the hell was going on last night. If lunch made me sick I should have thrown up something, and probably before I even left work. And if it was exacerbated by orange juice and Hawaiian sweet rolls, surely those would have made a command reappearance? There was nothing, and I heaved so hard that my abs hurt when I got up this morning. I don't like not knowing.

Silver lining? I've been sleeping pretty poorly the past several weeks and today I think I started to get caught up on what I've been missing out on, so that's good. And I do feel better, so I shouldn't have any issues getting up and going in to work, where we're getting ready for new carpet and some furniture rearranging that has me way giddier than you'd expect. Also, I found that my New Kids on the Block concert tickets had arrived yesterday, in plenty of time for the show, which is so unlike GroundCtrl that I'm pretty sure it's a miracle.

So I guess I can't really complain.



Of boogers, babys and blood-tests

Yeah, it's been a while. We have a one year old living with us. Are you really surprised?

If I'm honest, thinking about diabetes has been the absolute last thing I've been doing. Do we have enough diapers? How are we on wipes? When do we start giving the baby solid foods? Does that outfit come in another size, because kids grow so fast this one won't fit in two months?

And Bandit...man, is that dog whiney. He's old, he's diabetic, and he cries more than the baby does. Poor thing is driving me and my husband nuts, but what else can we do but deal with it? He's our baby, too. At least he's put some weight back on and is a trooper about the shots. Of course he's on the expensive Blue Buffalo food now, so that means Shiva and Rosabel are too...which means if anyone wants to Petco gift card me for my birthday, I'm for it.

Needless to say between the baby sometimes waking up at night, the dog definitely waking up at night, and my pump CGM going off several times a night sleep has become that friend who keeps telling me he's going to come by and see me but never does. On the other hand, I've grown closer to my buddy coffee the past few weeks. Some days I feel like chorus to a Jackson Browne song.

Yup. Running on Empty.

The short rundown of the last couple months, diabetes wise anyway, is that I've been using the generic insulin instead of the name brand and seen no real discernible difference. I've also started using the Bayer Contour Next blood glucose testing machine instead of the One Touch. Both changes are because of my insurance, if you'll remember, and I was pretty pissed off. Now? I don't really care.

Name brand no more.

 

Fact is I just don't have time to care. Diapers, feedings (both of the canine and baby persuasions), work...I'm busy! And because baby is a foster, we also have to add in birth parent visits, visits from his caseworker and visits from his lawyer. Seriously, the kid has a fuller schedule than I do. Even if the generic stuff wasn't working as well as the name brand I don't think I'd have to the time to protest the way I would have.

 

Fortunately, I really like the Contour. For one thing it has a color screen so it looks like something of this century. It's also faster than the One Touch was when it comes to reading my blood sugar, and it works just fine wirelessly with my pump. Also helps that I've been sent two free ones over the years, so I didn't have to buy one and I can have one to keep at home and one to take with me everywhere I go like I did the One Touch.

 

It has a USB....that means it's high tech.

 

I suppose someday when I have time I'll go in and set it up so that I can use my glucose testing device and computer together to track my blood sugars and see trends and stuff. The key words there are "when I have time" which in this case really means "desire to do it." I'm often doing dishes or laundry or diapers or a multi-tasking award worthy all three when I'm home, I can't do it at work, and when I do have a few minutes to myself I can think of SO many other things I'd like to do, like, oh...I don't know. Catch up on my blogging? It has actually taken over an hour to get up to this point between diaper changes and feedings and breakfast for me and the hubs, which he was kind enough to make for me, so when I do get a few minutes to myself it's actually really only a few minutes.

 

I know, excuses, excuses. How about this- I'd rather play Star Wars: The Old Republic with my husband for thirty minutes rather than putz around trying to figure out how to download software onto my laptop. At least it's honest!

 

Be careful out there today...it's the Ides, and we all know that means trouble!