Sunday, November 8, 2009

yes, i cry a lot~

only in front of my boyfriend and best friend, though. :)
this transition to the pump is overwhelming me. i am doing basal testing but ever since a couple of days ago, i've had mostly high BGs. we're talking even a 370. painful. my control was so tight before on mdi's. of course, i experienced more hypoglycemia due to stacking, so maybe i need to stop whining for a while until this all gets worked out.
i just wish i knew what to do. all i can do is get the basal rates down for now, i know. i need to stay focused on that, because surely it isn't the bolus i did for salad. but i worry that the whole 'the site can affect the absorption' thing people talk about is at fault here. god, i hope not. i only have so much subq fat. i'm a really small gal, so it's not like i can use the little bit of fat in my lower abdomen every.three.days. i have to go upwards a bit and i'm also using the bit by my hips (commonly known as love handles, of which i have none, LOL.) is the absorption really that different?
and man, am i hungry! this testing-requiring-fasting stuff is really hard when you hear your tummy growling. i can rarely go four hours without eating. boo.
i'm seeing my endo tomorrow, maybe we can just up the basal rate immediately due to these clearly out of control highs. i can barely stand it. sigh. the perfectionist in me.
on a positive note, matthew pointed out to me how well i adapt to things. it's only been a year and a half, and despite the (literal) blood, sweat and tears, i always keep on. i'm not afraid of change, that's for sure. at this point in my life especially, nothing shocks me anymore, LOL. much still surprises me; disappointment mixed with a whole lot of joy.
i also have two beautiful classical songs i downloaded that have harps and accordians and pianos and violins. they hint of sadness and hope intertwined as perfectly as i feel right now.
think i'll just keep it on repeat.


Elizabeth said...

Emily, I'm so sorry you're experiencing dosage difficulties!

I remember when I first got my pump (13 years ago), on the first day home my blood sugar went to 21!!! So, I'm happy to hear your doctor is erring on the high end instead of the low end! (Though I agree that it is frustrating to not have it in range!)

Here's how I know when I have an absorption/set/site problem: When I get a high number, bolus wizard for it to come down, and the glucose level does not respond, I change the tubing & set. (I used to change just the set, but sometimes it is actually the tubing's fault--and I don't want to wait around to figure out exactly whose fault it is anymore--I just change them both.) Sometimes I bolus wizard twice in a row before I notice it is a site problem, but it's usually pretty apparent (like when all you've eaten is salad and it goes way high).

Sometimes when it is scary high (like over 300), I'll bolus immediately with a syringe the amount the bolus wizard says--'cause I KNOW that should work! That gives me some immediate piece of mind, plus time to figure out exactly what the pump issue is.

Hopefully, your bolus wizard is set up right for you--ask your doctor to check into that tomorrow.

Also, are you checking your ketones? During the first week I got my pump, I completely stopped eating for two entire days--because I was SO happy that I didn't HAVE to eat anymore to counteract time release insulin. (Food freedom for the first time in over a decade!) Well, it turns out, I learned that, even with a pump one DOES still have to eat, as I was on my way to throwing myself into ketoacidosis! (My body was going into starvation mode, trying to rectify the fact that I had stopped feeding it--on a 'freedom' lark!) Luckily, I had the presence of mind to call the doctor complaining of nausea--and they quickly straightened me out on THAT misunderstanding! ;D

I know you are fasting to test basal rates, but don't fast so often that you accidentally do what I did! Check your ketones to make sure. (I had a perfect 104 blood sugar, but with 'high' ketones when I called my doctor!)

With more basal/bolus tweaking time, pumping will definitely get better!

Also, a book I can HIGHLY recommend to help you during this transition is Pumping Insulin by John Walsh and Ruth Roberts.

birdy said...

elizabeth: you are so comforting!!!
ya, i've been checking my ketones. it was pretty scary. maybe it was the site? i don't know. i had it on my upper abdomen...hey, where do you do yours and how do you do site rotation?
you're so funny; i ordered walsh's book last week, so it makes me laugh that we really DO always seem to be in parallel universes...LOL. i'm hoping his book'll smooth some things out.
it has been so odd to not have as many lows. i haven't really stacked since i got it, so that's why i'm trying to count my blessings with this. i love the insulin-on-board function of pumps.
don't worry, i'm not in 'fasting' mode. i'm just doing the standard one for night and morning basal tests: no food for four hours after dinner, no food after breakfast for four hours. it's just hard for me b/c i like a little evening and mid-morning snack...:)
hey, after my basals are figured out i would LOVE to learn about how/if you do combo (dual wave) and extended (square wave) bolusing. hmm,maybe i'll blog about it so people can comment. but you and i are so often on the same page about foods, etc that i really do want to hear your personal recommendations for how to do this--if you do. it's one of the main reasons i got the pump due to all the low-glycemic eating i do; mdi's were getting frustrating beyond belief!!

Lyrehca said...

Aww, hang in there, and hope your doc appointment figures some of this stuff out.

Try subscribing to (as well as using Walsh's book). When I first went on a pump in 2000, I read the IP emails religiously. (Get the daily digest, though--these people have a lot to say). Lots of people talking about all aspects of pumping.

It'll get easier!

Elizabeth said...

Hi Emily,
I'm sorry to say that I have no knowledge to contribute regarding dual and square wave boluses. (You are going to inspire me to go read more of Walsh's book in order to figure those out!) I've just never felt the need to use them before.

Not being low so often was definitely something to get used to! I was stacking something terrible before I got a pump with an insulin-on-board bolus wizard. Currently, my A1c is 5.8 and I'm low only about twice a month. Pumps are super great like that!

Site rotation: I move around using right and left hips, and the front right and left of my abdomen (avoiding 2" around my belly button, and the vertical midline). Any skin that doesn't have a bone directly behind it is fair game. I can't say that I am very methodical about it, I just move to a different area than where ever I just took a set out of, and look for space that doesn't already have a hole mark on it! I remember one time (7 years ago) I felt like I had run out of skin space and started using my upper thighs--which also worked fine, in terms of insulin absorption. I quit using them after a couple of weeks though, because it was too hard to keep the set in there. (It was always in the way when using the bathroom, and I kept accidentally pulling them out with all the clothes maneuvering.) Anyway, by the time I got frustrated with that, my other areas had recovered and I went back to using them.

Little extra note: I know they teach you to use an alcohol swab on your skin before putting a set in, but I've also found it helpful to use one when taking a set out, as it helps the tiny hole heal faster and better. Sometimes I even put Polysporin and a little circle band-aid on it (if it looks red when I take the set out). I've only ever had one site infection that scarred, but that experience taught me to make sure to never have another one!

Jim Huck said...

You have some smart friends; really good advice here.

Sound like your endo wasn't much help today. It's stupid for me to say that "the pump takes some getting used to." There are a lot of different variables to deal with, and trust me, your endo doesn't have any idea what they are. It's good that you're talking to as many pump people as you can.

Just be super careful when you bolus....better to be super high than super low. Site problems can definitely be an issue. I don't have them too often, maybe once every other month. I have a lot of sub-cu fat though.

email if you need anything jimhuck at gmail dot com.