what brings me down – #DBlogWeek Day 3

May 14, 2014
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May is Mental Health Month so now seems like a great time to explore the emotional side of living with diabetes. What things can make dealing with diabetes an emotional issue for you, and how do you cope? (Thanks go out to Scott of Strangely Diabetic for coordinating this topic.)

After Diabetes Blog Week 2013, I drifted off and didn’t feel like blogging for a while. A few weeks became a month, and then three…then six…and…here we are, a full year later. But what I didn’t want to acknowledge was that something else was going on as well. Quite a few things, actually, and most of them either were directly related to diabetes, or indirectly impacted my diabetes the way every. freaking. living. thing. impacts my diabetes in SOME way, because it does.

What was that something else, that made/makes dealing with diabetes an emotional issue? Let’s see…

The best medical care I’ve ever gotten for my diabetes was in the “Sweet Success” program for pregnant women with diabetes, and a few women with type 1 in the preconception stage (like me). I’ve been seriously grieving the loss of that expert, kind, diabetes medical attention ever since I had to stop going to the program because I…

Couldn’t get pregnant, and realized that I’m not ever going to be able to get pregnant, and surprisingly enough, I couldn’t blame diabetes for that one – that I’m aware of, anyway. Nope. I did everything diabetes-related preconception-wise perfectly. But my body decided to play yet another cruel trick on me. No babies for this body.

It made – and still makes – me so incredibly sad. I was ready. I was going to do anything I had to do, to take care of my diabetes and my body and me, in order to safely and healthily carry and birth a baby. Success story? Well, as much as anything could be under my control, and plenty of it wasn’t, but the rest of it? The diabetes preparation? I was ON it. That’s all it was supposed to take, right? Right? I was supposed to want it bad enough that I’d take good care of my diabetes, and THAT would make the difference – that was what everyone (books, blogs, doctors, random others) said!
 
So I did. I cared and paid attention to my diabetes like I had never done before. I whipped that fucking blood sugar into shape – 5.8 HbA1c? 6.0? 5.9? DONE. Weight? Lost it – 20 pounds of it. Everything else they threw at me, I handled. Except it didn’t matter.

So much of this diabetes life is straddling the insanely fine line between THIS IS ALL MY PERSONAL RESPONSIBILITY AND IF I JUST BALANCE IT A LITTLE BETTER AND IMPROVE MY SKILLS AND LISTEN TO THE DR. AND COUNT THOSE CARBS AND START EXERCISING AND TESTING MORE AND…AND…IT’S ALL UP TO ME, TO DO IT RIGHT AND MAKE SURE NOTHING BAD HAPPENS.

and on the other, completely opposite hand:

NONE OF THIS FREAKING MATTERS AND NO MATTER WHAT I DO, IT’S ALL A CRAPSHOOT. RUN THOSE NUMBERS ONE MORE TIME AND SEE THAT EVEN IF I AM PERFECT, ANY OF THE AWFUL THINGS ON THAT LIST OF COMPLICATIONS OVER THERE COULD STILL HAPPEN. MAYBE THEY’RE HAPPENING RIGHT NOW. WHO THE HELL KNOWS? NOT EVEN THE FREAKING DOCTOR.
 
I’ve hit the point in my diabetes journey where I’m honestly terrified that complications will set in tomorrow. And also incredibly guilty, because I haven’t experienced many of a very severe level…YET…It’ll be 34 years on June 13, and I *should* be grateful and happy and accept how lucky I am.
 
But I don’t trust that I’ll be one of the so-called “lucky” ones who hit 50+ years without diabetes complications.

There’s the big bad, right there. I don’t trust diabetes not to whack me, or my loved ones, upside the head. I don’t trust that bad crap isn’t going to happen due to this crappy disease. Diabetes, and then infertility/endometriosis, really drained my trust away.
 
Fear. Anxiety. Grief. Pain. Worry.
 
Whether associated with big-picture diabetes life, or the day-to-day chronic diabetes disease management life…they’re there.
 
(Don’t worry – tomorrow’s post will be brighter, and I’ll remember to talk about the coping then too. Thanks for letting me release all this and just GO this far down – it’s a little scary, but I needed to saywrite it.) xoxo
 

Here are lots of other posts from #DBlogWeek What Brings Me Down – Wednesday 5/14!


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.


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