yes, it's true, i am now the proud owner of a minimed insulin pump!
the 10 pound box arrived at my apartment on friday, but since i was away for the weekend i did not get to open it until sunday night. as i unloaded all of the cargo (reservoirs, infusion sets, linking meter, iv prep, etc.) i thought about how bittersweet the whole pump thing is. on one hand, i know it's going to make my life much easier, perhaps more like the "normal" i've known for 22 years...but. but. the pump is an outward sign that i have diabetes, that i have a chronic disease that is not going to go away. while being on injections may make my life more difficult and regimented, it also means that no one knows what i have unless i want them to. while i may be able to hide the pump much of the time, i know that sometimes it will be clipped to the back of my pants, begging questions that i may not feel like answering and causing assumptions to be made where they may not be warranted. it's not so much that i am concerned what others think, but the idea that i may not always be in control of how much information they get is what bothers me. i generally have no problem telling people that i'm a diabetic, but it's important that it's on my terms, and the pump sort of takes that away from me.
also, when i held that ridiculously expensive little beeper-like thing in my hands, it hit me that this thing was going to be attached to me for the rest of my life (...ok, maybe not this particular thing, but some form of it) and that was a lot to wrap my mind around. it's not like getting a new ipod or something, where it's fun but you kind of know it's a fleeting material thing. this is basically a new part of my body. and i know i will get used to it. eventually.
for now, i have to wait until april 8th to get all hooked up on saline and the 12th for real insulin. until then my living room will remain a storm of pump supplies, and i will be thinking of a name for my newest body part. suggestions are welcome.
i don't get you, blood sugar. or rather, glucose meter? i'm not quite sure who's to blame in this scenario.
as a lot of bloggers have been posting about meter accuracy recently, it's definitely been on my mind. mostly i've thought "wow, seeing things like 215, 165, 125 all within a minute is totally insane. i'm glad nothing like that has happened to me." there have been times where i've been lazy about washing my hands, and after some close contact with a banana i got a 116 mg/dL, which seemed odd given how i felt, so i washed my hands and then got 62 mg/dL, which made sense.
tonight, however, was just plain weird.
for dinner i had an english muffin with peanut butter, a can of green beans, and a cup of cooked broccoli (i know, that's a weird meal, what can i say). this is pretty standard fare for me. in fact, i ate the exact same thing last night, when i was 147 mg/dL two hours post meal and 81 mg/dL three hours post meal. tonight - 125 mg/dL at two hours and 147 mg/dL at three hours. what? why would i go up like that? i don't understand. is that just my meter and it's lovely +/- 20% accuracy? even so, i should be below 125 for sure. i rechecked, clocking in at 142, and even got out another meter, which said 135. i. don't. get. it.
this meal was perfectly measured, low carb, and something i eat all the time. has anyone else experienced things like this?
for a while now i've been wanting to experience a real shabbos. from friday night at sundown to saturday night 1 hour after sundown, religious jews observe shabbos, or the sabbath, and they refrain from doing pretty much everything. they can't use any electricity (though there are some ways around this), write, or basically do any kind of work. the idea is to use the day as what it was intended for in the torah (the old testament) - a day of rest.
my family is not religious. we were raised in a reform jewish temple, which is a totally different kind of judaism that does not have the same rule-based approach that orthodox judaism has. i have never observed the sabbath before, and until the last few years i knew very little about it aside from the fact that orthodox jews don't drive on saturday.
i got the opportunity this year to participate in a real, live shabbos. a co-worker of mine, whom i love, is an orthodox jew. when i mentioned to her that i had been interested in doing this, she immediately offered for me to come to her house. this has been in the works since september, and finally, this past friday night, we got it together.
first of all, it was a wonderful experience. k, my coworker, has a beautiful and kind family. her husband was a sweetheart, her two little kids adorable and well-behaved. the three of us adults stayed up until 1:45 AM friday night talking about pretty much everything. they were more than happy to answer all the questions i had about shabbat and orthodox judaism in general. they were even interested in my secular life as a single 22-year-old woman (most 22-year-old orthodox jewish girls are married and often have at least one child). on saturday, k's husband's brother and his wife came over with their 18-month-old. they are the same age as me, and she is expecting her second child this summer. it was a pretty surreal experience to be a part of this world that is quite different from the one i was raised in. overall, though, i loved it.
of course, this whole event would not be complete without diabetes making everything slightly more interesting. and by interesting i mean stressful and annoying. i didn't let it bug me too much; i was careful not to ruminate, but it was definitely testing me.
basically, shabbos is a diabetic nightmare. it's like 2 thanksgiving meals - one friday night and one saturday during the day. both meals begin with a blessing over grape juice that everyone drinks (ok not too big of a deal, i can take a microscopic sip) and then a blessing over challah (the yummiest jewish bread in the world) that everyone also eats. this is where problems begin to arise. the challah is blessed and then everyone starts chomping down on it. i have my insulin pen sitting on the table, and as i ingest this delicious high glycemic carbohydrate, the pen stares back at me. i can FEEL my blood sugar rising, and the actual dinner hasn't even started yet. i don't want to do my injection yet, because i have no idea what else i'm going to eat. i know there are a lot more carbs coming my way, but i haven't assessed them yet. i usually need to taste everything, see what's bolusworthy, and then go from there. but here we are, eating the challah, and just hanging out. every course of the meal is dragged out. it's shabbos, you're relaxing, so the meals last for hours and hours. you talk, you schmooze, it's great - except when you're me and you're silently freaking out about when/how much insulin to give yourself. finally i decide to just shoot up 8 units. i know i'll be eating a lot of carbs, and if i need more i'll take another dose. i couldn't sit there uncovered any longer.
so i take my insulin, and more food slowly makes it's way onto the table. gefilte fish (no carbs), minestrone soup (maybe some carbs? hard to say), sea bass (no carbs), vegetable casserole with bread crumbs (carb-y), potato kugel (carb-tastic), fruit cobbler roll (carb frenzy), and finishing with chocolate cake (holy mother of carbs). i ended up taking 13 units total, and was still in the 250s 2 hours later, and gave a bolus before bed.
lunch the next day was even worse. k was such a sweetheart - she tried to make a million things that i can eat because i'm a vegetarian, but unfortunately she didn't realize that it's not only sugar that i have to worry about. pretty much everything had carbs in it. and i am totally shooting in the dark (no pun intended) with insulin. i don't know how many carbs are in any of these things. for lunch we had challah again, salmon, carrot coffee cake, phyllo dough dumplings filled with spinach (made especially for me), stuffed portobello mushrooms, asian coleslaw salad, kugel again, chocolate cake again, and fruit trifle w/ whipped cream-y stuff on top. just typing that is making my sugar go up. i gave myself 18 units of insulin. 18. that's more than i usually take in a day. and 2 hours later - 220, 3 hours later - 215. GAHHHH!
granted, i ate a lot. wayyy more than i needed to. part of the problem is that the food comes out, and it stays out. on the table. in front of my face. a giant chocolate cake. and we sit at the table for hours. the meal began at 1 and we finally left the table around 4:30. it was great, but stressful. eventually i had to whip out my gum and chomp away to occupy my mouth and make it try to forget about the ridiculously yummy chocolate cake. it pretty much worked, but by that point i was already stuffed and not feeling so great. it doesn't help that i'm trying to lose a few pounds either. these meals were both dieter and diabetic unfriendly.
but so what, right? a few times a year we have to just give in and be ok with the highs. next shabbos, i'm going to have my entire gum arsenal under the table (i usually have 5-10 different kinds of gum on me at all times) and hope for the best. also, maybe i can ask for the menu beforehand so i can try to estimate carbs better. or i could just do the same thing i did this time and say whatever. it's only 25 hours of my life. may as well enjoy it.
a funny thing happened on the way to work today. well, it was more one of those "i know this will be funny later but right now i'm really f-ing annoyed" situations. my day started off not so great when i somehow managed to turn my alarm off instead of snoozing it at 7:15, and i ended up waking up again at 8:15(!) when i usually leave at 8:30. i frantically got ready as quickly as possible, and decided if my bg was safe i would make something to go and eat on the subway (i never do this - the dietitian who saw me in the hospital when i was diagnosed told me to always eat before work so as to not risk going low. since then it has been ingrained in me to eat breakfast at home, before work, every day). luckily i was 124 mg/dL, so i threw an english muffin in the toaster oven, slapped on some peanut butter and a piece of banana, and ran out the door.
now the question became, where/when shall i shoot up? i'm beyond caring about what people think, in fact, i thought, it might be kind of funny to freak people out by stabbing myself with a needle at 9 AM during our morning commute. plus, this is new york, we've all seen crazier things. i decided to do it while waiting for the train, and to be honest i don't even think anyone saw. i got on the train, grabbed a pole, and fumbled around to get my breakfast out. this is where things got interesting. i have this ridiculous thing where i like to separate my meals so that they seem larger - i just couldn't be ok eating this english muffin as a sandwich, even though i was standing up using one hand to hold on to the train pole, i had to pull the thing apart so i could have 2 separate halves. well, i'm sure you can guess how this turned out. pretty much immediately half of it was on the floor, peanut butter side down. first i'm like, shit, there goes half my food. then i think, crap, i already bolused for that! what do i do? i cannot possibly eat this thing. it has new york subway floor on it. but now i'm pretty much definitely going to go low in 2 hours if not sooner. oh this is so not a good start to my day!
but guess what, it all worked out in the end! somehow, maybe with all of the morning stress, i did not go low, stayed in range, and made it to work in one, slightly late, piece. i did actually consider eating the floor muffin, though. how gross is that? i can't even really blame it on diabetes...i think i just don't like to lose food! :)
this is also a little old - written february 27th - but it belongs here.
i've been reading the blog of a dad whose 7 year old son has diabetes. it's so striking to me how this disease reverberates through a family - especially when the person who has it is young. charlie, the boy from the blog, was 22 months old when he was diagnosed. TWENTY TWO MONTHS OLD. i was twenty two years old, and that was difficult enough. but i am the only one who manages my disease, and manage it i do! for charlie, he has a whole team - mainly his mother and father, but also siblings, teachers, school nurse, etc. it's incredible. i feel so much for this family. i also feel so lucky that i had 22 years without diabetes. 22 years to eat carbs without consequence (...not entirely true, but without scary, life-threatening consequence). if there was such a thing as a 'good time' to get diabetes, i would say 22 was it for me. it waited through my little kid years, which judging from charlie's dad (carey)'s blog would have been pretty difficult for everyone. it waited through middle school (again, can't even imagine how that would have worked), and through high school, and thankfully through college. i got diabetes 4 months after i graduated college. talk about timing. i had only been doing the real-life, adult routine thing for 2 solid months when diabetes came along. so if you think about it, diabetes is the divider between my childhood and my adult life. i will never be an adult without diabetes, and i will never have known it as a kid.
reading carey's blog is both painful and heartwarming. i am kind of addicted to it right now, just like i was to kerri's when i first found it. i don't know what i would do if i had a child with this disease. obviously i know a lot about it, but it's still managing another person, which is inherently different than managing yourself. i cannot imagine my mother as a parent of diabetic child. it requires SO much around the clock monitoring. what the hell would she have done? i am thankful for her sake that she does not have to bear the burden of my disease. but sometimes, as sick and twisted as this might be, i wish she did. i just wish she knew what it was like. i think she has a better idea of it now than before i was diagnosed. but even still, i don't live with her, and i think she probably forgets sometimes how drastically different my daily life is. i shouldn't say that. it's not drastically different. it just has this very important unique process that has to occur multiple times a day now, which it did not have before and which she has never had to live with herself. i remember sitting in the ER with her on september 20th, and i was just asking a billion questions a minute. what does this mean? can i have sugar? i have to give myself shots? for the rest of my life? and she was being a trooper, but i also think she was doing her optimism thing, where nothing is really "that bad," except that it is, and she's just sugar coating things (no pun intended) in an attempt to make me not freak out. but also, i think she genuinely did not know. how could she? i sure as hell didn't. and i sure as hell do now.
i actually wrote this february 27th, but i figure it's an appropriate first entry.
i'm thinking about starting a diabetes blog. i don't know if i'm quite there yet, though. to the point where i'm going to make the assumption that someone might want to read about my life. but i just keep reading other people's, and i love all of them. i love the feeling of "oh my god, you do that too?!" and "i know exactly what you're talking about." i even get that those feelings sometimes when i read the blogs of people i have pretty much nothing else in common with except diabetes. i'm going to start here, write an entry about diabetes/my life, see how it feels.
...so i'm supposed to be taking enough lantus only to make a "baseline." i should have to bolus for e-v-e-r-y-t-h-i-n-g. but it's a bit tricky to find that right number. last night i took 11, woke up this morning at 110 mg/dL. that's perfect, right? except that i drank last night...totally throws a wrench into things. i'm inclined to think if i had not drank, i would be 140 or something. but also i didn't sleep that much...went to bed at 2:30ish and woke up at 9. i guess we'll see how the rest of the day goes.
also did a new experiment with breakfast. i like to be able to enjoy my oatmeal in the morning, and today i didn't want to dawdle too much pre-gym because i'm meeting my gma at the opera at 1, so i decided to do a small breakfast, go to the gym, and then have oatmeal and eggs after. i basically switched my mini-lunch-on-the-go (english muffin w/ pb) with breakfast. i put a few slices of banana on it too. yum. interested to see how this goes blood sugar-wise. i'm still going to put gatorade in the water bottle, rather be high after than low.
it's funny to think that, when i was first diagnosed, i thought a day would come where this would all be 100% figured out. i can't help but place some blame on all the doctors/nurses/cdes that i saw, who told me essentially that. i guess they have to...i guess i needed to hear it at the time. but what's the truth? the truth is that there is no 100% figured out with diabetes. you will never be as brilliant at your calculations as your formerly healthy pancreas was. also, you cannot predict the future, so you will never be able to anticipate random hormonal/stress/life things that happen and totally fuck your shit up. oh, you just bolused and ate lunch, and someone's giving you brownies? hmm...that's unfortunate. oh, for no apparent reason at all you wake up at 150? hmm...woops! although, i don't even know where i went wrong. you feel guilty. obviously somewhere in there you made an error. but i'll be damned if you can figure out where that error is 75% of the time. ok, maybe 50%. and i'm still honeymooning. i have not yet experienced the horrors of a completely fried pancreas, like my other blogger friends. i still have some back up going on there. it's by no means functional, but it helps me out, i think. and how does that work...am i going to wake up one day and be 250 or something? when does it end?
oh diabetes, who ever knew we would become such close friends.