1. That diabetes comes with so many (false) stereotypes.
Aren't diabetics fat? Doesn't diabetes mean you'll die? Can you have a baby without going into kidney failure? ::cough:: Steel Magnolias ::cough:: All diabetes is the same and it means you can't eat sugar, right? If you are on an insulin pump, that must mean you have really bad diabetes. You're an adult, so that means you can't have juvenile diabetes! Guess what! If you lose wait/eat a special diet/ take a pill full of lizard spit you'll be cured!
Some days I'm so fed up with all the media hype and falsehoods and stereotypes that run rampant about diabetes. It seems like everyone is stuck in the 80s when it comes to diabetes management and complications. Can someone please explain to the media and the public at large about insulin pumps? And the differences between Type 1 and Type 2? And that I didn't do this to myself? I try to be patient and I really do want to educate people but some times I feel like I just can't it explain it one more time! And even worse are the days when I try to educate people and they just smile and nod and I can tell they are thinking I'm the one who doesn't know anything about my own condition! Arggh!
2. Meters that make you wait before you put the blood on the strip.
Because inevitably, I'm going to screw up and put the blood on before its ready and I'm going to get a big fat ERROR and I will have wasted my $1.20 strip. Grrr!! I loved my Freestyle that was ready for blood the second you put the strip in, it was so nice. Unfortunately, my Ping meter is a One Touch and it is constantly out to get me!
3. The fear that creeps up unexpectedly.
Most days I don't think about my mortality. But there are days (usually during one of my annual appointments) when I worry that the other shoe is going to drop and my first complication will crop up. And I get this image in my head that one tiny complication will blow up into my entire body falling apart. And with Katie here, the idea of diabetes getting the better of me or slowing me down in any way just scares me that much more.
4. It's ALL THE TIME.
Ok, most diseases are all the time as in, they never technically go away. But asthmatics don't wheeze every couple of hours. People with sickle cell don't hurt every day. Epileptics don't have a seizure every time they want to eat something. I'm not saying that ANY of these folks have it easy or that I would want to trade. But for me one of the worst parts of diabetes is that there is no remission. It's not like if you get your blood sugar under control you can sail for a few days or even a few hours. Diabetes is an every-hour-of-the-day kinda disease. Blood sugar seems to be one one thing in your body that is affected by every single, tiny, little thing you do. With every bite. With every physical activity. With almost every decision, you have to be aware of diabetes and plan for it. It's mentally exhausting! And some days I just want a frickin' break!
5. The math SUCKS.
The are some days I'm just sick of all the equations. There are the "easy" ones that I can almost do in my sleep: Insulin sensitivity + carb ratios -blood sugar correction=bolus. And for those I feel very lucky that God invented the bolus wizard on my pump. Amen! But then there is all the extraneous stuff that doesn't have a hard and fast value assigned to it like exercise + hormones + sickness + how old is the insulin in my cartridge? + could my site be going bad? + breastfeeding = who knows how much insulin and who knows what blood sugars! Good luck and have fun with that. GAH!
If you don't know what I'm talking, about here's a great video from George and Scott about the suckage that is diabetes math and a post from Karen about how complicated and unpredictable that math can be! What? You didn't know that sometimes 1+1 doesn't equal 2? Well, with diabetes, sometimes it doesn't!
6. That it can take me out of my life when I least expect it to!
It doesn't matter if I'm at work or (more importantly) at home with my little one, I have no desire to be forced to put my life on hold because I'm groggy and low and need OJ. It's not fair. Sometimes I can squeeze out a few extra minutes of coherence but eventually the foggy mind and tingly lips will overtake me and, whether I like or not, I need a time out. And for a Type A like me who doesn't like to be told what to do (even by my body!) that's rough. :-(
7. The horribly misplaced guilt.
Every blood sugar seems to have the potential to serve up a big plate of guilt. I can't believe I guessed the wrong carbs? (But how could I have known that a side salad would have 80 carbs?!?) Maybe I shouldn't have had that dessert. (But it was my birthday!?!) Maybe I should have replaced that site instead of keeping it another day longer. (But it looked and felt great and it was a really inconvenient time to put another one in!?!)
How is it that a disease that is so unfair and unpredictable can still make us feel so guilty for every decision and/or indiscretion? Guess what?!? Most people don't have to Google every carb they eat just to double check it for accuracy. And most people don't have to feel guilty about a piece of cake on their birthday. And most people don't have to worry about slinking away to the bathroom so that they can hoist up their shirt, rip out one site and jab another one in themselves just in case it goes bad.
This is WAY out of the realm of what most people call normal. But "normal" for a diabetic is what most people would call over-the-line, hyper-awareness combined with incredible patience and willpower. But we don't see it that way because it's just what we have to do to be healthy and feel good. Yet I still berate myself every time I "am bad" like I am such a horrible person for not having the willpower to power through all the crap. Well, I call BULLSH!T.
8. It always crops up at the worst time.
How does a cartridge that last 3 days always need to be changed during an hour-long errand when you didn't bring extra supplies? Why do the low symptoms crop up the second before I'm about to breastfeed my frantically hungry baby girl? Why does my site go bad during the 5 hours I actually sleep at night and not during the day when it's SO much more convenient to fix? It's like Murphy's Law of Diabetes!
9. It totally messes with my fashion and gets in the way.
I'm so super sick of the little rectangular, pager-shaped protrusion that juts out of my right pocket every day of my life. (Yes, I always wear my pump on the right side no matter where my site happens to be. Yes, I've tried to change it up but it just doesn't feel right anywhere else. No, I don't know why.)
I hate that I can't seem to hide it in my cleavage on my favorite dresses and if I clip it to my underwear it pokes out and gives me freakishly pokey/angular/uneven hips. It's so obvious and it drives me insane. I hate that I have to think about where I'm going to put my little pink external pancreas with every fashion decision. And that sometimes wearing a skirt or a pretty sundress (and as a result trying to find a place to secure my pump) is sometimes a hassle that I'm not willing to deal with. Oh! And I hate that my tubing seems to jump out of my pocket and lasso every knob/door handle/baby's foot that is within reach. Gah! Cut it out!
10. That with all the bads of diabetes, it's not just me in this boat.
That's right. I really don't like that diabetes has to drag my loved ones down with it. It's bad enough that it can make me a crazy person some days but it sucks that it has a way of affecting everyone around me as well. Whether it's because I'm super grouchy because my blood sugar is high and taking it out on the nearest loved one. Or because super needy and loopy because my blood sugar is low and need the closest friend/relative/husband to drop what they are doing and help me procure some fast-acting carbs ASAP.
But mostly I hate seeing the look of worry flicker over my mom's face. I hate that when I'm upset about a day of unrelentingly high blood sugars and worrying aloud to my husband about what havoc they might have wreaked on my eyes/kidneys/heart, that he has to worry along with me. I hate that maybe he (and later, Katie) may worry about how they will take care of me if anything goes wrong. Or, God forbid, what they would do without me. That's not something that husbands, mother's and children should have to worry about with any regularity. The people around me shouldn't feel responsible for taking care of their adult wife/daughter/mother and it breaks my heart that for my loved ones it's a thought that is sometimes forced to cross their minds.