dblog week 2013: share and don’t share

May 13, 2013

diabetes blog week 2013

Hey, it’s dblog week again! I’ve come out of hiding to see if I can pull a few posts together. Here’s Monday’s prompt:

Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?  (Thanks to Melissa Lee of Sweetly Voiced for this topic suggestion.)

Hey, dr. wonderful. Great to see you here. There are plenty of things I wish you could see and know about my life with D. It’s not all pretty, but it’s me. Here we go.

1. I’m a few weeks away from my 33rd diaversary, and at this point in time, I’m wondering how the next 33 are going to go–and how I’m going to make it through them. In another 33 years, I’ll be 73 years old. On one hand,  I fully expect to make it there (and beyond) with few complications. On another hand, that’s a hell of a long time. It’s another lifetime. I’m already bored with all that d-maintenance takes. How am I going to make it through another 33+ years?

2. The dawn phenomenon seriously fucks with every weekday morning, and any weekend morning when I get up before 9am. Why can we not figure this thing OUT? We’ve tried slamming it with a honking basal increase from 6-9am. We’ve tried a graduated increase starting at 4am, then again at 6am, until 9am. We’ve also tried a lesser increase from 12am onward. I’ve tried not eating breakfast (BG still rises at least 50, more like 75, points in an hour). I’ve tried eating a tiny snack the second I get up. I’ve tried bolusing for breakfasts I don’t actually eat. What. The. Hell. Are we ever going to win this game? Because it’s been a long time now, and I’m sick of this. Doesn’t your medical degree, plus my brains and experience, trump my liver?

3. I don’t like low BGs. But they’re just easier to deal with – not that I LIKE dealing with them, because I don’t. Seriously. But it’s easier to grab and ingest 15 carbs, and wait 15 minutes, than it is to give a correction. And wait. And test. And wait some more. And figure all the numbers out again, just to be sure. And wait. And test. And rage bolus/stack. And wait. Some more. And test. And…yeah. That’s harder for me. I can feel my blood sugar rising, and I know if it’s more than 140. I can’t feel the lows, but that somehow makes it not as bad. The highs make me feel yucky, and they can take forever to remedy. Please know that I’m not trying to be low all the time. I just hate being high.

4. Performing. It’s something I love to do, either singing or acting or speaking in public, and it makes my BG RISE rise RISE. Sometimes as much as 100-200 points, no carbs involved! I know it’s not running marathons, and it may not seem athletic at all, but it’s serious to me. I could really use some help with this. I hate feeling the way I do at 300 while I’m supposed to be singing or giving a presentation. It’s hard to sing or speak with fuzzy mouth, sweaters on teeth, and dry throat. I don’t know how to deal with and fix it, and I don’t know how to manage it through experimentation since I can NOT go low while I’m performing.

5. I’m the same person who for most of my d-life, barely tested, had crazy high BGs, and have a really messed up relationship with food. About 3.5 years ago, I decided I wanted to get pregnant. I am honestly amazed at the way I wrapped my arms around my d-management and got my BGs under so-called “control.” The whole pregnant thing did not happen, and now here I am. I’m not sure how to keep my diabetes under “control” just for me. I don’t know why else to do this if it’s not for the higher purpose of taking control of my disease in order to keep a baby healthy. I also don’t know how to let go of the super-tight control of the trying-to-get-pregnant-lady. I have no idea what I’m supposed to do right now…but I don’t want to go back to the HbA1cs of yesteryear. I just don’t know how to do this.

What do I hope you don’t see? Not much. I don’t think you can help me unless you know what my life is like, for real. I spent way too many years feeling ashamed for the food that I binged and the blood tests I never did and the fake numbers I put in the logbooks and the exercise I didn’t sweat and the insulin I did or didn’t give…once I finally put all of that DOWN, I don’t care that you see it. In fact, I need you to see me – just as I am. I don’t do the unhealthy things as much these days, but sometimes I don’t make the healthiest choices in the world. I’m not going to hide. Don’t try to make me feel bad for what I am, and what I do. Join with me. I need your help, and I’m worth it.

p.s. if you could wait until the end of my appointment to take my blood pressure, that would be awesome. Not only do I have the whole white coat syndrome going on, but I’m always running late, cruising across the Golden Gate Bridge, frantically searching for a parking spot, and running up to your office, breathless. I bet my BP will be much closer to what it should be if you give me a few minutes to calm the hell down. Parallel parking is rude.

 

Here’s where to find all kinds of Share and Don’t Share posts!

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17 years

June 10, 2012

to the love of my life…

my forever partner in all SORTS of crazy…

my co-mama in the growing and raising of Ms. Diva…

the best person to ever happen to me…

you were Type Awesome before we even knew what that was.

*****

type 1 diabetes is not fair for or decent to you, either.

when we met, I ignored the crap out of it.

I told you that I had it and what it was, because that’s what I do.

but that didn’t mean I took a tiny bit of care of it, or of myself.

this broken pancreas gets in your way, too.

thank you for not letting it scare you out of our life.

*****

you are here with me in every moment of d.

all of the annoyance, fear, pissedoffedness, anger, resentment

of the challenges and pitfalls d brings our way.

AND, more recently, in the joy of the “LOOK at this 24-hour/7-day/30-day/90-day average!!!!!!!”

the amazement of the first A1c of 6 or below

of finally feeling like something is going right with d.

you are here, and I am so grateful for you.

*****

I don’t know how we took some of the journeys we took without some major d-mishaps taking place–

pure luck, and the universe winking in our direction.

standing on line for Lilith Fair in New Mexico and boiling the insulin.

me leaving on a plane for Nashville, my pump sitting on the towel rack at home in New York.

that other time I took both sets of house keys with me to the conference in Denver

(not d-related, but my goodness, there have been plenty of things for you to complain about!)

scares with eyeballs, pumps, insulin, insurance denials, new endos, no insurance at all…

no matter what, you have my back and fight the good (and bad) d-fights with me.

thank you.

*****

you learned about insulin & sugar, carbs & IOB, potential complications & depression.

about how awful  450 mg/dl is.

the difference between BGs that lower just the right amount

and unsuspecting, unsymptomed lows that creep out of nowhere

you found me slumped on the kitchen floor, gazing into the open refrigerator, and got some juice in me.

you went with me to endo appts. with dr. wonderfulendo in a different state, when I told you

I needed to see an endo with a brain instead of the dr. crappys that were a dime a dozen where we lived.

you listen when I’m scared or mad or just burned the hell out.

and you help. even if I snap at you when you ask if I need help.

you help.

*****

you make everything okay, somehow, in ways I don’t begin to understand.

navigating mazes of EOBs and phone calls and blood tests and backdated referrals,

shouldering the bother and the annoyance, the crap and the everything

picking it up when I just have to put it down

just for a minute.

thank you for supporting me, for loving me and all that d brings with me…

when Dex screams all the freaking night long b/c it thinks I’m 40, when in fact I’m 80(!!!)

when I forgot to put the pump back on and we just got our InNOut order.

when I start testing my blood just when we’re about to have dinner.

when we decided that 6 negatives were enough,

and we already have the perfect amount of enough with us and our daughter.

we are enough. together.

*****

seventeen years ago we began.

in that time, so many lifetimes.

so many moments, and not just the d-ones(!)

thank you for every single one of those moments, those days

and every one still to come.

*****

happy anniversary, my love.


wish I could be…maintenance-free

May 28, 2012

I’m in such a freaking crankypants-y mood today. There’s a lot of stuff swirling around in my brain. I spent the morning doing chores around the house, and it feels like some hormones are elbowing their way to the front of the Line of Annoyance. Once there, the ever-gaining hormones keep poking me in the head. Constantly. Like a bratty little brother. I’d like to scream at them to knock it the hell off, but then I’d scare those around me in real life, so I won’t. Although those around me are probably afraid anyway, because of the way I’ve been acting today.

On this, the last day of the 3-day weekend, I vacuumed and washed the mostly hardwood and little bit of tile floors throughout the ground floor of our townhome. It’s not like it’s a huge space, so I really shouldn’t even think twice about it. And I’m glad when it’s done, for the few brief shining moments before dogs or daughter or adults get stuff on it and start the cycle again. I should be glad to be able to get into the work, get it done, and enjoy the results.

Except that lately, I’m just overwhelmed with the maintaining of everything, both diabetes-related and not. The second the last bit of laundry is done, there are more clothes in the baskets to clean. The clean dishes get put away, and there are more on the counter that need to be washed. The last square foot of floor is vacuumed and scrubbed, and the dogs come scattering through with hair and dirt and dogginess. It’s like a neverending run on the treadmill–lots of effort (sometimes), but never getting anywhere.

Add the diabetes-related chores to the list of  household chores that never end, and I am just not entirely sure where there is anything different from one day to the next. Blood test, bolus for carbs or correction, test, test, test, respond, treat low, test, test, test, exercise, deal with whatever happens due to exercise, change pump site/CGM sensor site, test, test, tell CGM to shut up, again, test, test, freak out about potential impending complications, freak out about new weird physical changes and whether or not they’re diabetes-related, test, test, stress…and so it goes. I’ve blogged about it before, too, so even that’s redundant. Nothing new.

Maintenance…

It’s a nevernending and never-certain chore, this diabetes maintenance. The only other option I see is non-maintenance, otherwise known as ignoring D intentionally or being in denial of it unintentionally, and neither of those seem like good options to me, for me. When I don’t test for several hours, and when I go on a rant of eating tons of junk food and sweets just because I feel like it and no one can stop me damn it, it doesn’t feel good. I have to fight for hours after to get my BG back down to where I feel okay. So that really doesn’t do much to help me feel less burdened from taking care of D. It’s a pain in the ass.

Truth be told, there’s not much to be happy and proud about when I’m doing all the d-maintenance stuff RIGHT, either. A lower HbA1c is great and nice and fun to look at when the test results are ready, but then what? There’s no gold star, no award, and no fun summer vacay as a result. Just get back on the treadmill and keep running, thanks. Don’t stop. Don’t slow down. Just keep going.

I think I have burned out. (I can’t stand the look of the word “burnt,” it just seems wrong.I just can’t use it. Besides, if I’m describing a negative result of having burned the candle at both ends, let’s say, then I want to use the word “burned”–it’s more active.) Not entirely sure how to fix it, how to get back into the swing of things. In a few days, hopefully things won’t seem so dire and forlorn when the hormones have lessened to some extent.

More maintenance chores: I have the annual Dr. D-eyeball appointment in a couple of weeks. Of course I’m freaking about it. And oh, look at that–I scheduled it for the day before my 32nd diaversary. Hmmm. I also requested the forms to see if I can get my medical records from 1980, when I was diagnosed with type 1 and admitted to the hospital for 13 days after coming into the ER, and from another time around 1984, when I was in the hospital for a few days with DKA after secretly refusing to give my shots for about a month or so. I’m trying to figure out if I need to go in, and if so, to what kind of dr., regarding my ongoing stint with super dry eyes and dry mouth that are driving me nuts. My mom was diagnosed with Sjogren’s syndrome a few years ago, and I’m freaked that I might have it too. Autoimmune and all. The more the merrier. Or, the seasonal allergies could just be after me worse than ever before this year…who knows.

I’m just super tired of maintaining. But there’s not much else to do…just keep going. Wish I could hire a trainer to carry the worry and do all  the maintenance business for me, just for a couple of days. I’d like to try something new, and not have to keep doing it for years and years and years. Just be able to put it down when I was tired of it. Just for a little while. That would be awesome.

At least the floor is clean. Or was for a few hours, before the dogs came back inside.


my diabetes shero

May 20, 2012

My “diabetes shero” is my daughter, Ms. Diva. She does not have diabetes, but she is the daughter of this mama with type 1. And she is amazing.

She has never known anything different than her mama with several buzzing and clicking little devices hanging on or around her body, even when she didn’t know what they did or why I needed them. I wasn’t sure how it was all going to go when it came time to tell Ms. Diva about diabetes. I read some different blogs about other moms’ worries, and decided I wasn’t going to think about it until the girl brought it up herself. Then I’d figure something out.

She was 5 years old when it happened. One day, Ms. Diva watched me prick my finger, squeeze blood onto a test strip, and said “Mama, why do you have to do that?” She’d seen me do it many times before, but that day, something provoked her to find out.

“There is an organ in our bodies called a pancreas. Mine stopped working when I was 7. Yours works great. It makes something called insulin, which helps your body use the food you eat to keep your body strong. The pump (point to pump) holds insulin. The meter (point to meter) tells the pump how much insulin to give me, through this tube. It works hard to try to keep the sugar in my blood at a healthy level.”

“Your pancreas doesn’t work?”

“Nope, babe, it doesn’t. Hasn’t for a long time.”

“What happens when you need a juice box?”

“Well, my pancreas still doesn’t work, but I’ve either taken too much insulin or eaten not enough food, or exercised too much. Then there isn’t enough sugar in my blood. Like when I say my blood sugar is low, you know? That’s when I need some juice.”

“Okay.” And she went about her day, to play Dinosaur Train and read some Fancy Nancy books.

The next day as we were sitting at the dining room table, she asked me a question. After I answered it, she looked at me intently and said, “Mama, your blood sugar is low.”

“Sweetie, why do you say that?”

“The way your voice sounds. When your voice sounds like that, you need a juice box.”

Ms. Diva was oh, so correct. My BG was 45.

“Thanks, honey.”

“No problem, mama. Will you tell me about the no-hitter on your Dex again? Do you have one right now? Can I see it?”

That girl. She had all of my heart from the moment we saw the little peanut in my partner’s very first ultrasound, and of course from the moment she was born, and a zillion times after that. But that day she let me know she’d noticed my diabetes without thinking that it made me different or less of a mother; noticed and remembered what I needed to take care of the diabetes problem at an annoyingly imperative time; and let me know that it was no big deal. She relieved some really giant fears I’d been carrying around inside without even knowing it.

I so love that my dumb pancreas and my diabetes are NBD for Ms. Diva.

I love her so much.

She’s my diabetes shero.

So many other cool diabetes sheroes and heroes right here, go read some more!

D-Blog Week 2012, Day 7: Let’s end our week on a high note and blog about our “Diabetes Hero”.  It can be anyone you’d like to recognize or admire, someone you know personally or not, someone with diabetes or maybe a Type 3.  It might be a fabulous endo or CDE.  It could be a d-celebrity or role-model.  It could be another DOC member.  It’s up to you – who is your Diabetes Hero??


what they should know

May 18, 2012

I’m not stupid. My blood sugar is 40 mg/dl.

I’m not a bitch. My blood sugar is 398.

I’m not a whiner. My blood sugar is 285.

I’m not a spaz. My blood sugar is 52.

I’m not paranoid. My blood sugar is 36.

I’m exhausted. My blood sugar just dropped from 357 to 102 in 2 hours.

I can’t make sense of the sentence I just read 10 times on my computer screen. My blood sugar is 45.

I just started a fight with the woman I love, even though I know I’m wrong and she’s right. My blood sugar is 259.

I’m enraged. And crying. And hopeless. My blood sugar has been riding between 250 and 325 for 12 hours and nothing I’ve done has made a damn bit of difference.

I’m overwhelmed and can’t make a decision. My blood sugar is 55.

I am terrified and I’ve eaten 120 carbs. My blood sugar is 67.

I wish I could just feel my “real” feelings, and not have to wonder whether I really feel the emotions I think I feel, or whether the feelings are caused by the amount of sugar in my blood.

I’ve been called “emotional” many times throughout my life. I’ve never been ashamed or felt bad because of my emotions, and in fact I’ve been glad to feel them–the real ones. But I wish I knew how much of my emotions are due to wonky BGs and how much is really me, my emotions.

The BG-related emotions are fake to me. Imposters.

It’s really hard work to pull myself together and not completely freak out about the emotions that accompany high or low BGs. It feels like a huge load to carry.

And sometimes, I AM just stupid or bitchy or whiny or spazzy or paranoid or exhausted or confrontational or enraged or overwhelmed or overeating, and my blood sugar is a so-called perfect, normal 104. But I don’t want to hear anything about it from anyone. There. I said it.

WTF.

For other What They Should Know – Friday 5/18  Link List.

D-Blog Week 2012, Day 5: Today let’s borrow a topic from a #dsma chat held last September.  The tweet asked “What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?”.  Let’s do a little advocating and post what we wish people knew about diabetes.  Have more than one thing you wish people knew?  Go ahead and tell us everything.


what a girl wants: fantasy diabetes device

May 16, 2012

I just want everything to be all in one place, easily accessed by all kinds of wireless devices, not exorbitant in price, covered by both private and government insurance as necessary, reliable, and accurate beyond any accuracy we think we have today.

My dream diabetes technology is something that does it ALL. By all, I mean:

  • continuously tests/checks/monitors glucose levels. I’m not rabid about where the glucose is found–blood or interstitial fluid, whatever works and is the best that science says it needs to be, but it has to be continuous as I want moment-in-time readings as well as trends.
  • infuses insanely pretty much instantaneous insulin, preferably directly into my blood. I know, that sounds scary and all, but really. We shouldn’t have to be waiting around forever to get insulin that might decide to work in the next 10, 20, 30 or more minutes under the fat layer of our skin and then wait for it to get into our bloodstream. That’s crazy talk, yet that’s our lives. And that’s just for the “rapid” acting insulin.
  • can point at food or beverage, look it up in some colossal carb/calorie/nutrition index in the cloud, and spit the carb count directly into my bolus formulas AND my downloadable logs! BOOM!
  • ALL my data, from all the glucose tests and monitoring and insulin infused and carbs eaten to all the exercise completed and stress levels and real people sickness and day of my cycle and HbA1c both current and historical and other health monitoring data from external tests and hell, let’s put amounts of SLEEP in there too.
  • available in pretty, easy-to-understand, colorful (but not TOO colorful) infographics.
  • let the data flow into reports or forms that look like log sheets, if that’s what the medical community needs to be able to understand it.
  • with reminders. and prompts. and fun messages from my endo and CDE.
  • instant messaging with them would be great as well.
  • I think I’m describing a device as well as an app. a power app. one that looks and operates the same on Apple or android. and is available on the web as well.
  • keep it all on the cloud. with all kinds of security and whatever else to keep it reasonably safe from being erroneously posted on my Facebook page, but really, honestly, I don’t care if it is. I just want it easy to access and available when I need it. And I want dr. wonderfulendo and CDE, dr. wonderfuleyeMD too, and whatever other medical professionals need it, to be able to access it too.
  • the device also needs to be tiny. Seriously tiny. I think I’m thinking of 1 device to wear, that would communicate with a smartphone or iPod, iPad,  computer, whatever.
I just want it to be easy and accurate. Condense all of the crap I have to carry with me everywhere, and condense the amount of crap I have to remember and do and figure out and share, so that I can concentrate on other things. And, as I’ve said before on a similar topic, make it look super cool and fun. A little glitter never hurt anything!
Check out what other d-bloggers have to say about this here.

D-Blog Week 2012, Day 4: Today let’s tackle an idea inspired by Bennet of Your Diabetes May Vary.  Tell us what your Fantasy Diabetes Device would be.  Think of your dream blood glucose checker, delivery system for insulin or other meds, magic carb counter, etc etc etc.  The sky is the limit – what would you love to see?


just call me jenga-girl

May 15, 2012

…in pure confessional mode tonight, especially since I’ve been quietly raging against planking blood sugars in the 160-199 range since about 4pm this afternoon. (It’s almost 11pm.)

I’m a stacker.

When I don’t pay attention. When it’s been a couple of hours and there is no down arrow on Dex the continuous glucose monitor. When a perfectly good, accurately-calculated correction bolus has been given ample time to work and yet that damn BG just. won’t. come. DOWN.

I stack correction boluses.

If I’m feeling extra special feisty, I’ll throw a bolus for some carbs in the middle of a correction bolus stack, because I’m just that pissed at the infernal high BG and I’m hungry.

Numerous times my CDE and endos have looked at my logsheets and mentioned, “You tend to stack a little.”

Sometimes the wonderful D-team will follow the previous observation with: “Do you think you could wait longer before you correct again? Maybe 4 hours?”

They see my face–4 hours? Seriously? “Well, how about 3?”

(I do mean it, they’re wonderful. They really read over my entire logsheets and ask good questions, and help me think through some solutions to my current d-dilemmas.)

Yes, I’m a stacker.

I don’t MEAN to do it, not in a “I’m going to intentionally harm myself because I don’t know well enough what I’m doing and/or I think it will be fun.”

But. Just about the most frustrated I ever get is when I’ve done all that I can do to get a high BG to lower, and it won’t budge. Over several hours. Sometimes I end up crying because it feels hopeless. And I just feel sick–headache, sick to my stomach, fuzzy teeth, dry mouth, a heavy feeling as if concrete is slooooooowly inching through my veins. Blech.

I stack those boluses.

I’m impatient, not only about high BGs coming down but about many many other things in life. I get impatient that correction boluses don’t work immediately, even though I use rapid-acting insulin.

Really? Rapid? It’s not rapid waiting hours and hours for a BG to come down. Not eating anything because I’m afraid of what will happen then. Guzzling water and sparkling water and diet soda and ice cubes while I just want to eat some real food.

This being my confession, I can also say that I have improved at not stacking so much over the last year or so. Yet the possibility of stacking is always there in the background. I have to be really mindful, all the time, and stop myself from giving another bolus when I still have insulin on board (IOB). It’s a process, for sure. But I have gotten better at blocking the stacking urge.

Like right now, for instance. BG is 224, it went UP in the last few hours! Grrrr. Now I’m thinking that I messed up the carb counting at dinner, which added to the stuck BG and risk of my stacking tonight.

And so I’ll start again tomorrow, trying and working hard not to stack. It’s a neverending process.

Check out the other posts about One Thing to Improve here.

D-Blog Week 2012, Day 3: Yesterday we gave ourselves and our loved ones a big pat on the back for one thing we are great at.  Today let’s look at the flip-side.  We probably all have one thing we could try to do better.  Why not make today the day we start working on it.  No judgments, no scolding, just sharing one small thing we can improve so the DOC can cheer us on!


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