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!


arduously, painfully boring d #hawmc day 18

April 18, 2012

“There is only one thing that Lena could do. She could be so arduously, painfully boring that Effie would leave the next day. And that, at least, came naturally.” (Ann Brashares, Sisterhood Everlasting, p.143)

Type 1 diabetes is naturally arduously, painfully boring. It bores me to tears. From the day I was diagnosed on June 13, 1980, through my pre-teen, teenage, young adult years, and well into my 30’s, it bored the daylights out of me. Before I was exposed (and thrilled by, believe it or don’t) the data of my diabetes experience, I could not have cared less about doing all the things associated with caring for myself, over and over and over. Painfully boring! And it never ended! All of the monotonous things to care for myself STILL never end, but at least I’ve found some aspects of it that make me wonder…and wondering makes me question…and questioning makes me collect and compile and describe and list the data, and try to analyze it so I can tweak my care regimen and improve, sometimes. And that is good.

Some really rough numbers to illuminate the arduous and painful boringness of my type 1 diabetes:

I started testing my blood in about 1982. Let’s use an average of 3 blood tests/day from 1982-1990; 2 tests/day from 1990-96; 3 tests/day from 1997-2009, and 15 tests/day from 2010-present day. That’s about 41,000 blood tests. Just thinking about it puts me to sleep!

Incidently, it would also be 41,000+ lancets for each one of those blood tests IF I changed my lancet every time I tested. But I don’t. It’s too boring. 😉

Between the many years of hardly any or just flat out no blood sugar control, and the last couple years of attempted very tight control, my blood sugar is low–less than 70mg/dl–probably an average of about once a day. Over the last almost-32 years, that’s roughly 11,680 lows that needed treatment with carbohydrates. We’ll just ignore all the times that I overtreated lows due to my body feeling like it needed to inhale everything with sugar in my reach, and assume treatment with 15 grams of carbohydrate for each of those lows. That’s 175, 200 grams of carbs.

Okay, that number might be a little interesting (or gigantic and disgusting if you think about the entire amount at once). But the need to constantly feed, or treat, the lows, is boring. Especially since it works best for me to treat every low with the same kind of sugar (juicy juice apple juice box) so that I can track the results. Insanely boring, is what that is.

On the other hand, searching for new or different food to give me 15 carbs to treat my low is arduously boring and causes a whole lot of pain too. It takes too much energy to try and think of something else that works, and works well.

I’m just going to SWAG this next one and say that I’ve probably spent close to 384 hours (1 hour/month x 12 months x 32 years) on the phone with insurance companies and durable medical equipment/supply company billing departments, arguing about  prescriptions or pump supplies or test strips or insulin or endocrinologists or eye doctors or other services that were covered, at least to some extent, by my insurance coverage at that time, but billed incorrectly or just not billed to insurance, or not coded correctly, or just forgotten along the way by the insurance company.

Zzzzzzzzzzz…sorry, so boring. Again. And neverendingly so.

I feel really lucky that within the last couple of years, I’ve realized that what’s interesting–at least to me–is finding the trends in my diabetes numbers. What time of day am I high? Low? How many days in a row? But in order to do that, I have to go through the boring stuff and remember to test, and fill in my logsheet, and take time to look at it and figure out which options might work.

Remembering the interesting parts, and taking the time to find them interesting, helps me not blam my head against the wall with the arduously painfully boring d-stuff.

Cupcakes, glitter, unicorns and rainbows help too.

This post was for Day 18 of wego Health Activist Writer’s Month Challenge. Open a book. Choose a book and open it to a random page and point to a phrase. Use that phrase to get you writing today. Free write for 15-20 without stopping.


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