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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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.


dear 16-y.o. smartDpants (#HAWMC day 10)

April 10, 2012

Dear smartDpants,

I’m so proud of you, of all you have achieved and still will achieve in the future, while having type 1 diabetes. You’ve done everything you’ve wanted to do despite this disease. You haven’t lost your mind (because of diabetes, anyway)!

You’re deep in the middle of living and loving and finding out what you like most, what thrills you to your core, what’s meaningful to you in your life. I wish that you could find a way to incorporate caring for yourself and managing your blood sugar into the rest of your life’s development. I wish it weren’t so bothersome to constantly think about and care about your BG, insulin rates, food intake, and other health choices. It IS possible, even if it is a bother and takes mental focus away from things you love much more. Please consider taking the time–it’s not very much time, and you could feel so. much. better., physically and mentally, than you do now. It would be awesome if you felt good while you’re performing in choir and show choir and musicals and plays and recitals, and also while you’re learning and writing and thinking and having fun with your friends. You could feel so much better. Just try it, and see how it goes.

I know you have not had good experiences with doctors, nurses, and dietitians with regard to your D. Please believe me when I tell you that there really are medical professionals out there who can help you take care of yourself, and manage D, without blame and shame and stigma–without making you feel bad for feeling. You just haven’t met them yet! But you CAN learn about how to care for yourself and your D without the dr. crappys who don’t know how to treat people with diabetes. Stay strong. Keep up the faith that you will find good medical care. Not simply, or easily, but you will. Know that you deserve good, no excellent, medical care, provided with respect. You will find a dr. wonderfulendo, and more than one, in the years to come.

It’s going to be hard to hear this and know it to be true, but food is neither bad nor good. It’s something your body needs in order to survive, and it needs insulin in order to be useful to your body. It also impacts your blood sugar. It’s not a reward, and it’s not hurting anyone but you when you eat without bolusing or eat certain foods just because the nurse and dietician told you they were bad. The more crap you eat, the more insulin you’ll need. That’s all.

The numbers that show up when you test your blood are not bad or good, either. They’re just numbers. THEY’RE JUST NUMBERS. They do not determine your worth, and they do not mean that you are good or bad. They just are.

Numbers have power. BGs…carbohydrates…basal rates…correction boluses…and also, minutes of exercise and pounds of body weight. You can use that power to benefit your health, not to make you feel guilty and terrible. With knowledge and training, you can use the numbers. I wish that you would do this for yourself. There is no need to fear or hate the numbers, or the process of retrieving them or thinking about them. You can use your brain to analyze them, and to make decisions about what will help you feel better than ever! It’s not hard, you just have to speak up and ask someone who knows about type 1 diabetes management to teach you.

You know this in your heart already, but what the dr. originally told your parents when you were diagnosed in 1980 was a lie. There will not be a cure for diabetes by 1985, and there will still not be a cure by 1990, or 2010. It’s going to take a good long while–we still don’t have a cure in 2012. There are some really awesome researchers working on it, and the first outpatient clinical trials of a closed-loop system called an “artificial pancreas” have just been approved. It sounds super amazing. And remember when just a few years ago, an actual insulin pump was the size of your bedroom? Yeah. Things have gotten better–they’re not fixed or solved yet, but they are better technologically in so many ways. (Testing your blood will only take 5 seconds instead of 2 minutes, and all the data will be available for you to see and use on a small computer called a laptop! Awesomesauce!!)

Even though the doctors and nurses label you “emotional” and “noncompliant,” don’t accept those labels. Living with this lifetime disorder causes a lot of emotions/feelings/responses/decisions…and it takes some serious emotional work to maintain a clear head and not be a complete, freaked-out zombie over all your life requires. And while your blood sugars are consistently running at a very high level right now, with some massively low lows sometimes too, you don’t have to accept being called “noncompliant.” You are NOT a “bad diabetic.” You’re not stupid, and you’re not a bad person, either. They just haven’t found ways to communicate with you about diabetes such that you can listen and hear how to take the best care of yourself. You challenge them, and they’re not able to deal with it.

Take it easy on yourself. Your pancreas is broken, but your spirit is not. You have family and friends who love you regardless of how stupid your pancreas is. AND, you had one of the most important and incredibly COOLEST supports a kid with diabetes can have: CAMP!!! You’ll be able to apply to be a junior counselor in just a year or two, and you’re still in touch with so many amazing co-conspirators from diabetes camp. Guess what?  In about twenty years you’re going to start taking part in a huge community of people with diabetes communicating on computers from all over the world, and you’ll find a bunch of your friends from camp whom you won’t have seen for many years. You’ll also find many, many other wonderful people with diabetes in this “virtual” community. It’s real community, and it’s important. Don’t wait for it to come to you. Go find it, and speak up when you get there.

Just know this: You’ll still be kicking around here when you’re 39 years old, with a 32-year diaversary on the horizon, and you have NO plans to give in to this disease. You’re headed for that Joslin 50-year medal, and it’s not going to stop there! Please think about what I’ve said, about taking care of yourself and taking steps to whip that diabetes into better shape now rather than later. You could feel a lot better. I know you can do it.

This post is for wego Health Activist Writer’s Month Challenge. The prompt: Dear 16-year-old-me. Write a letter to yourself at age 16. What would you tell yourself? What would you make your younger self aware of?


d-superpower (#HAWMC day 3)

April 3, 2012

If I had a superpower, it would be knowing which factor(s) played the most prominent role in whatever random, crazy-ass blood sugar (RCA BG) is showing up on my meter at that point in time. Hell, I’d like to be able to tell which factors were responsible for ANY type 1’s RCA BG! Wouldn’t that be so awesome? No more guessing! No more frustration!

Because, on any given day, some RCA BG shows up (let’s be real, sometimes there are more than one per day) and then I get to play the type 1 “Many Questions Game” to try and figure out what happened, and what to do next. Between equipment malfunctions, type 1 malfunctions, and regular life malfunctions, the number of factors playing a role is huge. Here’s a sample of an RCA BG situation of mine:

3pm. Meter says: 269 mg/dl. Dexcom says: 250 with 1 arrow going straight up ^, meaning the trend is that it’s rising at 2 mg/dl per minute. And the questions start piling up in my brain:

  • Did I eat lunch?
  • What time did I eat lunch?
  • How many carbs were in my lunch?
  • Did I bolus for the carbs in my lunch?
  • Did I SWAG (scientific wild-assed guess) the carbs in my lunch?
  • Did I correct for whatever BG was before lunch?
  • Do I have any IOB (insulin on board) now?
  • Is my pump tubing blocked?
  • Is my pump infusion site bloody, blocked or otherwise malfunctioning?
  • Did my pump site get disconnected?
  • Is my pump site getting too old?
  • Did I refill my pump with insulin this morning?
  • Did I use a new insulin infusion set?
  • Is my pump site in scar tissue?
  • Is my insulin at the end of the bottle, when it can get suspicious for some odd reason?
  • Was I low this morning and turned my basal rate down or off for a while, which F’s up the hours afterward?
  • Was I low this morning and turned my basal rate off, and did I forgot to turn it back on?
  • Did I forget to check earlier this morning for the stupid dawn phenomenon, and correct if it was high?
  • Did my dawn phenomenon go even higher than it usually does this morning?
  • How much caffeine have I had today? Have I had more caffeine than usual?
  • Have I exercised in the last 4 hours? 8 hours? 12 hours? 24 hours?
  • If I did exercise, what kind of exercise was it? aerobic or anaerobic? For how long?
  • Have I gotten up from my desk in the last several hours?
  • Did I eat something in the office kitchen when I was passing through earlier?
  • Did I bolus for whatever I ate, if I ate something?
  • Did I test before I ate, if I bolused?
  • What day of my cycle is it? One of the days each month when I need to crank the temp basal up? (Hello, PMS/insulin resistance!!)
  • Am I stressed–about work, about life, about anything specific? More stressed than usual?
  • Stressed about anything other than this high BG?!?!
  • If I am stressed, what amount of stress am I having and what’s my stress correction factor? How many insulin units per how much stress? HOW does one measure amounts of stress to allocate units of insulin for it?!?!

I got exhausted just typing these questions, nearly as badly as if I were dealing with them right now. With my superpower, I’d know both WHY the RCA BG was whatever # it was, and I’d know WHAT TO DO to fix it immediately and so it didn’t happen again. What a relief that would be.

No. More. Random. Crazy-Ass. Blood. Glucose!

For the wego Health Activist Writer’s Month Challenge (#HAWMC) prompt for Day 3: Superpower Day. If you had a superpower – what would it be? How would you use it?


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