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.


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: we, the undersigned

May 14, 2013

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Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) – get creative!! What are you trying to change and what have you experienced that makes you want this change? (Thanks to Briley of inDpendence for this topic suggestion.)

Hello, medical schools, intern and residency programs in endocrinology! Also, greetings to nursing, dietician/nutrition, and CDE programs! Have I got a petition for you:

In order to form a more perfect union of fact and feelings; endocrine and emotional; medical and (real-life) mess…

In order to provide treatment for diabetes  that is more collaboration than compliance, and more recommendation than mandate…

In order to see people with diabetes as the human beings that we are, rather than some hypothetical model or ideal that we can never fully achieve…

We people with diabetes – of all types and treatments, all BGs and HbA1Cs, of carbs and/or protein, of various caffeines and d-technology -

Do solemnly (unless we’re reading some The Cinnamon, because really, that stuff is hil.ar.i.ous, and quite frankly, you should be reading it too) request:

All y’all need to do some time- and experience-intensive training in how to speak with us.

Because in those 7, or 10, or 15 minutes if the person after us has cancelled at the last moment, we really need you to make the absolute most of your time with us.

Ask us the right questions, about not only what we’re having problems with, but also what’s WORKING for us.

Spend most of your time listening to what we say.

Learn how to respond in ways that are supportive of where we are, and help move us (and help us make the choices to move) toward the healthier behaviors we already KNOW we could be using.

Have the most recent research available to support both your recommendations and OUR choices.

Don’t ever shame us or treat us like I’m stupid.

Listen to what we tell you. Ask us on-point questions about what we say, not about what you thought we said or should have said.

Tell us we’re doing a good job. Look and listen HARD to find something to compliment. Even if it’s just that we came to our appointment. (Because it’s not JUST that we came to the appointment. That could be EVERYTHING, for many of us, on some days…)

Refer us to resources that are worthwhile, that know what we’re going through, that are helpful. That don’t waste our time.

Don’t waste our time. These are our 7, or 10, or 15 minutes too. Make the most of them WITH us.

Play for my team. Cheerlead. Analyze. Strategize. Watch the play-by-play. Coach me on how to play better. But for cripes’ sake, play with me, not against me. And don’t just sit there on the sidelines, get in the damn game with me. I need you on my team.

In support of this petition, and in support of better and more training for medical professionals to treat people with diabetes of all types, with a firm reliance on the not-always-perfectly-accurate readings of our blood sugars and the protection of the injectable, oral, dietary, physical, and spiritual interventions necessary to keep us alive, we mutually pledge to you our interest in your success, our participation in the process, and our honor as people with dysfunctional pancreata who know what we really need in order to stay alive to the best of our abilities.

Signed, this Fourteenth day of May of the year 2013.

 

Click here for tons more We, The Undersigned petitions.


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!


Happy 1st Anniversary, You Can Do This Project!

June 15, 2012

Dear Kim,

I have really strong memories of a little more than a year ago today.

It was Tuesday, May 3, 2011. Glee was on.

There were lots of us from the DOC tweeting away.

A brand new Google Chrome commercial came on, for the It Gets Better project.

I watched in awe, and bawled my eyes out. Turns out I wasn’t the only one.

But Kim, in your brilliance–because that’s what it is–you didn’t just cry.

You were inspired.

And you took that energy, that love, and that idea of support and community for every one of us,

and you made something.

Something absolutely amazing.

A year-ish later, and the amazingness has Just. Gotten. Started.

(And shit has gotten extremely real, wouldn’t you say?)

You Can Do This.

Thank you does not seem anywhere NEAR close to how I feel,

but it will have to do, a little bit.

You are a gift, and you’ve given PWD and our loved ones all over the WORLD a gift.

You’re just that kind of cool.

Thank you:

for reminding us.

for sharing with us.

for creating a space for us.

for making it safer to say what it’s like to be us.

for asking us.

for inspiring us.

over and over.

for being YOU.

My tears, this time, are still from awe and inspiration. This time, it’s all about you.

“Would anyone be with me on this?”

Yes.

We are with you.

Love, Sarah


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.


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