Change the World – #dBlogWeek Day 1

May 12, 2014

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Today’s topic is Change the World.

Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Whether or not you “formally” advocate for any cause, share the issues that are important to you. (Thanks go out to Kim of Texting my Pancreas for inspiring this topic.)

This prompt is a pretty easy way for me to get back into the bloggy groove after almost exactly 1 year (gasp!). Yes, it’s been while. Hi, how have you been? I just went to the endo today. HbA1c was 6.9, thanks. I thought it was going to be a lot higher – go figure. I’m still not thrilled with what feels like a lot of highs, and I’ve been SWAGging my way through far too many carbs without even thinking about them (duh), but I did go for 2 little walks today. Progress. Oh, and I had surgery last month. Recovery’s been slow but just fine.

But let’s get moving on this #diabetesblogweek prompt!

3 major diabetes issues come to mind right away that I’d love to see change significantly: the ease with which anyone with diabetes can find trained, appropriate, compassionate, supportive medical care for their diabetes; the ease with which anyone with diabetes can access and use their own data, whether the data is from a lab, blood glucose meter, insulin pump, continuous glucose meter, or other piece of technology; and the ease with which anyone with diabetes can find and spend time with others who are in the same kind of boat.

I feel passionately that it should be easy to find a doctor or certified diabetes educator (CDE) who is well-versed in current research about recent technological and treatment options that may be appropriate for patients depending on the various contexts of their lives. It should be easy to find providers who are compassionate for and with us – not sympathetic, not pity or shame for us, but providers who will join WITH us and ask us “how can I support you in getting what you need for your diabetes?” This should be the gold standard, not the exception. In my experience, it feels like the exception – I’ve had several Dr. WonderfulEndos, for sure, but I’ve also had the Dr. Crappys as well – and unfortunately I’ve heard about them from others, too.

Just as much as I need medical providers who are well-trained about diabetes in both brain and heart, I also need access to my data – the numbers describing the vital diabetes and -related functions going on in my body – in a format and layout that is easy and useful for me to understand and make decisions. Without that, I can’t make choices that will be best for me. Any talk of making the “right” choice or the “best” choice, not mention the “healthy” choice, is incomplete without knowing my blood sugar, the direction it’s trending, how much insulin I have on board, how many carbs I ate in what time span…and so on…

Finally, I’m passionate about diabetes camp. I was diagnosed at age 7, attended camp from age 8-14, and went to diabetes teen retreat from age 15-17. I was lucky enough to go back and be a junior counselor, and then a counselor, at diabetes camp from when I was 18-22. For 14 summers, for about 1 week, I got to feel completely normal. There is no way to explain it to someone who doesn’t get it, but I will say it’s the biggest RELIEF ever. Like a giant boulder suddenly lifted off my shoulders and vanished for a week, that I didn’t realize was there the other 51 weeks out of the year until it was gone.

After grown-up responsibilities took over, and I moved around and couldn’t get back to my beloved diabetes camp but didn’t know where to find another, and years went by without it…I realized how much I missed the d-camp experience. I also realized how much I really needed a grown-up d-camp experience. I’d try to get it with support groups and meetups, which are wonderful, but not quite the same.

Then.

This.

Kind of like diabetes camp for grown-ups.

#BAMThereitis. You’re welcome.

Happy Diabetes Blog Week, everybody!

 

***Here’s the Change the World – Monday 5/12 Link List.


dblog week: memories

May 15, 2013

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Wednesday’s prompt: Today we’re going to share our most memorable diabetes day. You can take this anywhere…. your or your loved one’s diagnosis, a bad low, a bad high, a big success, any day that you’d like to share. (Thanks to Jasmine of Silver-Lined for this topic suggestion.)

Hmm. Interesting. An entire memorable day of diabetes? Just did the math, and I’m looking at 12,015 days (32 years, 11 months) of diabetes so far. Lots of memorable ones in there. Here are just a few right off the top of the list:

5. the day I left my pump at home on the towel rack and jumped on a plane to a multi-day conference. I know, I blogged it before – it’s just so memorable. who DOES that? this girl, that’s who.

4. the 24 hours I spent playing board games, reading magazines, eating predetermined amounts of takeout food, and having my finger poked and blood drawn every hour, in a clinical trial for the Glucowatch, one of the first (was it the first?) CGM-type glucose monitoring devices. I still have the scar on my inner arm from where it sat and irritated my skin.

3. the day our daughter, MsDiva, was born. From 3am on Sunday morning when A. called to me and said it was time to go to the hospital, to 1:04pm when the Divagirl arrived; throughout the afternoon, evening, and night to the next morning…pure bliss with no memory of what diabetes was doing. I have no idea what my BG was during that time, I don’t remember testing my BG (this was back in my barely-testing, no-management days), and I have no idea what we ate (I assume we did, seeing as how my love had just given birth and all) or what I bolused. My diabetes took a back seat that day, very appropriately so. So much happiness.

2. the moment my dr. wonderfulendo told me that I didn’t have to be some “perfect” or “normal” weight in order to control my type 1 diabetes. All my life, from the time I was 7 at diagnosis, doctors and CDEs and nurses had told me that I was overweight, and that I needed to lose weight in order to manage my diabetes. (Note to medical professionals: this was an effective method to instill distorted body image and disordered eating, and convince me that I was not worthy of decent medical care.) I cried when I heard him say that although it would help if I lost some weight, he could help me get my BGs under control. This simple-sounding statement let me know that I was worthy of receiving top-notch medical care that would help me be healthier. It changed my life.

1. Last summer, I got to meet another diabetes blogger in real life for the first time. Cara, from Every Day Every Hour Every Minute, came to San Francisco with her bestie to see a little of the city and the final shows of the tour of their all-time favorite Broadway show, American Idiot. We met up in the morning, got a parking spot at the top of Lombard Street (!!!), walked up and down Lombard, drove around the city, stopped by the Painted Ladies/Full House houses and Alamo Square Park, lunched at Catch for some yummy seafood, and waited on line for rush tickets to the show that night. And the show was fantastic, BTW.

But the coolest, absolutely most wonderful thing was seeing/meeting Cara that first moment and feeling like we’d known each other forever. Despite the broken pancreata as our connection, we just CLICKED and it was like we were old friends. (Spending several hours together in the rush line helped us get real-life acquainted, too. Incidentally, it was the same kind of fabulous with her Type Awesome BFF – just without that diabetes connection.)

d-blogger meetup: two girls & their pumps, san francisco 2012

d-blogger meetup: two girls & their pumps, san francisco 2012

Oh, the memories…check out all the other memorable diabetes days on the Memories link list!


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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