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.


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.


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?


letters to dear dr(s). crappy and wonderfulendo

May 10, 2011

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There have been so many of you, I’ll just number you chronologically. Your offenses are very similar: condescending attitudes; inability to listen to what I shared with you; flat-out inaccurate information about this disease; labeling me “noncompliant” or “emotional” and then using that as an excuse not to provide the best medical treatment I needed…and so on. Here we go. (the yrs. old = my age when I saw these drs.)

Dr. Crappy #1 (7 yrs. old): You misdiagnosed me, leaving my mom with “she’s got a flu bug” which several weeks later became me almost falling asleep in the pool during swim lessons. How could you not smell the ketones on my breath? I was drinking at least a gallon of water a day, falling asleep sitting up in the middle of the afternoon, and spending the rest of my time in the bathroom peeing everything out. Easy enough to get urine in a test tube when it’s coming out of me so frequently–WTFructose?! Shame on you.

Dr. Crappy #2 (7-17 yrs. old): You were pretty much the only endo in town. You labeled me “overweight” and “an emotional eater” when I was 10 years old, and I wasn’t overweight (I have my medical file from your office). Every time I came to an appointment, you told me to lose weight. At what point might it have occurred to you that another approach would be helpful? Never?  I attribute at least part of what’s been the story of my life with craptastic body image, eating and exercise behaviors to you.

Dr. Crappy #3 (19-20 yrs. old): You refused to provide medical advice for my diabetes until I lost weight. You have type 1 diabetes, and prided yourself on averaging about 65 mg/dl at any given time, and keeping a bottle of glucose tabs with you everywhere and just “popping a few” as needed–but not too many, watch out! Many times you compared yourself to me with disparaging comments about my weight, my (lack of) BG control and overall “noncompliance.” Thinking of you still makes me cringe.

Dr. Crappy #4 (35-36 yrs. old): You upped my basals constantly based on what–my HbA1c? Because I sure never gave you any BG data to base any decisions. Most of the rest of your patients were type 2, and your nursing staff constantly forgot that I have type 1. Due to your misinformed increases in my insulin ratios, rates and all else infusion pump, I ate all. the. time. and ran low all day, needing more and more food and sugar just to be able to think for a minute. I firmly believe that many of the other meds I “needed” during that time weren’t really indicated, because my symptoms were coming from always being low. I do admit that had I tested more than twice a day (on a good day), I would have had ample data to fight back. But you shouldn’t have been changing anything without that data anyway.

Dr. Crappy #5 (37-38 yrs. old): I am grateful that at least you knew that #4 had me on way too much insulin. Very grateful. I’ll admit that. But, you went way over into the other end of the pool, with your low-low-low carb diet recommendations and strong suggestions that sound just a little bit anorexic-crazed. I’m really glad you never broached your trademarked nutritional protein supplement food replacement thing to me, because I would have lost it on you. Your staff doesn’t know the difference between types 1 and 2, and one said (in the same breath) “Your BG is too high, you need to watch that. I had a patient die from going too low, though, so watch out for that.” You’re also a little lazy, wanting me only on a Medronic pump because the rep hangs out at your office every week, then suggesting the Omnipod because a colleague of yours loved it. Do some research, find out what’s available and then talk options! I will say THANK YOU for writing the letters for my Animas Ping and Dexcom cgm, but you didn’t even want to know how they worked! That’s just weird. Get over yourself.

WHEW! Enough of that ickiness. Nice to get it out there, though. Now, on to the good stuff.

Dr. WonderfulEndo #1: (21-32 yrs. old) THANK YOU for telling me “it would be better if you could lose some weight, but it’s not necessary in order to get your BG under control. You don’t have to be skinny to manage the type 1.” Thinking about it almost makes me cry. You provide the best, most current, most supportive treatment for your patients regardless of their circumstances, and that is so incredibly rare. Here is where I apologize for still not testing more than 2-3 times/day and not providing you with decent data so that we could make the best decisions about my care. We could have done great things together–and I am so grateful for all of my appts. with you. Then, when I didn’t have great or much insurance coverage you didn’t collect anything over the amount billed to insurance. If you hadn’t done that, I would have had to break up with you. SO GLAD that I didn’t have to! You. ROCK.

Dr. WonderfulEndo #2: (38 yrs. old-present day) THANK YOU for listening to me, sitting with me for up to an hour at a time, and looking at my crazy logs of 15 BGs/day and everything d-related, speaking to me as an intelligent person with 30 years of experience. THANK YOU for talking to me as a problem-solving partner. THANK YOU for treating me as someone capable of doing the necessary things, even though they’re hard, in order to take better care of myself. THANK YOU for saying “we can figure this out,” and then helping me do that! THANK YOU for making it easier for me to “tweak” boluses and basals, and for only taking on 1 “tweak” at a time–not my entire plan for my entire day, because that doesn’t do anyone any good. You. Also. ROCK.

p.s. to WonderfulRD/CDE and WonderfulNP/CDE (38 yrs. old-present day) THANK YOU for listening, for laughing and crying with me, for looking at my numbers and logs and ALWAYS asking gentle, positive questions about what I CAN do, never chastising me for what I haven’t done/didn’t do. THANK YOU for alerting me to the fact that I’m a big correction stacker–I’m still trying to limit that a little. THANK YOU for making certain things sound possible, and for celebrating with me when they are! I cry just thinking about how much you’ve helped me. Looking forward to all kinds of goodness to come…and can’t believe I just typed that about my d-team: it’s such a relief, a joy, and a privilege to have medical providers who get it, and who can bring it. It’s about time.


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