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


saturday snapshots with D

May 18, 2012

 

 

 

 

 

 

 

Check out all the other Saturday Snapshots right here!.

D-Blog Week 2012, Day 6: Back for the third year, let’s show everyone what life with diabetes looks like!  With a nod to the Diabetes 365 project, let’s grab our cameras again and share some more d-related pictures.  Post as many or as few as you’d like.  Feel free to blog your thoughts on or explanations of your pictures, or leave out the written words and let the pictures speak for themselves.


what a girl wants: fantasy diabetes device

May 16, 2012

I just want everything to be all in one place, easily accessed by all kinds of wireless devices, not exorbitant in price, covered by both private and government insurance as necessary, reliable, and accurate beyond any accuracy we think we have today.

My dream diabetes technology is something that does it ALL. By all, I mean:

  • continuously tests/checks/monitors glucose levels. I’m not rabid about where the glucose is found–blood or interstitial fluid, whatever works and is the best that science says it needs to be, but it has to be continuous as I want moment-in-time readings as well as trends.
  • infuses insanely pretty much instantaneous insulin, preferably directly into my blood. I know, that sounds scary and all, but really. We shouldn’t have to be waiting around forever to get insulin that might decide to work in the next 10, 20, 30 or more minutes under the fat layer of our skin and then wait for it to get into our bloodstream. That’s crazy talk, yet that’s our lives. And that’s just for the “rapid” acting insulin.
  • can point at food or beverage, look it up in some colossal carb/calorie/nutrition index in the cloud, and spit the carb count directly into my bolus formulas AND my downloadable logs! BOOM!
  • ALL my data, from all the glucose tests and monitoring and insulin infused and carbs eaten to all the exercise completed and stress levels and real people sickness and day of my cycle and HbA1c both current and historical and other health monitoring data from external tests and hell, let’s put amounts of SLEEP in there too.
  • available in pretty, easy-to-understand, colorful (but not TOO colorful) infographics.
  • let the data flow into reports or forms that look like log sheets, if that’s what the medical community needs to be able to understand it.
  • with reminders. and prompts. and fun messages from my endo and CDE.
  • instant messaging with them would be great as well.
  • I think I’m describing a device as well as an app. a power app. one that looks and operates the same on Apple or android. and is available on the web as well.
  • keep it all on the cloud. with all kinds of security and whatever else to keep it reasonably safe from being erroneously posted on my Facebook page, but really, honestly, I don’t care if it is. I just want it easy to access and available when I need it. And I want dr. wonderfulendo and CDE, dr. wonderfuleyeMD too, and whatever other medical professionals need it, to be able to access it too.
  • the device also needs to be tiny. Seriously tiny. I think I’m thinking of 1 device to wear, that would communicate with a smartphone or iPod, iPad,  computer, whatever.
I just want it to be easy and accurate. Condense all of the crap I have to carry with me everywhere, and condense the amount of crap I have to remember and do and figure out and share, so that I can concentrate on other things. And, as I’ve said before on a similar topic, make it look super cool and fun. A little glitter never hurt anything!
Check out what other d-bloggers have to say about this here.

D-Blog Week 2012, Day 4: Today let’s tackle an idea inspired by Bennet of Your Diabetes May Vary.  Tell us what your Fantasy Diabetes Device would be.  Think of your dream blood glucose checker, delivery system for insulin or other meds, magic carb counter, etc etc etc.  The sky is the limit – what would you love to see?


a sweet ride

May 10, 2012

So we bought a new car a couple weeks ago. Our weekly commute mileage, the price of gas, work schedules of me and A, and Ms. Diva’s ever-intensfying school, activity, and summer camp schedule made it imperative that we do something, instead of continuing to talk about doing something. We ended up choosing the new PriusC, and we totally love it.

Of course, having type 1 diabetes and being a primary driver for our family means I’m looking for certain criteria in any potential new car. Of utmost importance: storage for the sugar products I like to have close at hand in case of lows. The PriusC provides plenty of room for this.

Four 4.2 oz. Juicy Juice boxes fit in the front console!

Four juice boxes in the glove box, too.

Both front doors also have spots especially for bottles of glucose tabs! (okay, for water bottles, but whatever. They’re perfect.)

A little bit of non-sugar sweetness: Ms. Diva & the new car

I am thinking that I may need to put some of the juice boxes into a small cooler pak instead of the console to keep them from boiling during the summer months, but that’s no big.

It’s really nice to have a car that we can trust when I’m driving so much. And it’s equally good to know there’s plenty of room for my sugar stash. 🙂

***Toyota, Nestle, and Target have not paid me or provided any product(s) (!) for me to write this. I’m just thrilled with our recent car purchase, and these are the products I use to bring my blood sugar back into range.


the first time I gave a shot in my stomach #hawmc day 28

April 28, 2012

The first time I ever gave a shot of insulin in my stomach, I was about 10 years old. I’d had type 1 diabetes for a few years and gave multiple daily injections in my arms or thighs. But for some reason, the idea of giving a shot in my stomach gave me the creeps.

My family and I were visiting my grandparents during summer vacation. Everyone else was in the dining room, getting ready to have lunch. My mom and I had been “discussing” me trying to use my stomach, to give me more options for shot territory, for weeks. I had given my mom a lot of attitude about it. That day, she went all tough love on me and said after I’d given my shot in my stomach, I could join the family for lunch. But I wasn’t going to be allowed to have lunch without giving my shot, and I wasn’t going to ruin the rest of the family’s time with my whining and whatever other mess I was dishing out about the stomach area.

I sat on the couch in the living room for a looooong time. I don’t know what had built up in my head around giving shots in my stomach. I don’t even know if I was afraid of potential pain, or something else. So I sat and stewed about it. I did hold the syringe in my hand the whole time, and a few false starts where I drew back to plunge it into my skin, then did a sharp halt each time. A couple of times I put everything down and tried to get up the nerve to go into the dining room with my family without completing my task. Then I sat back down and picked up the syringe again.

Eventually, I did it. NBD. Even though it was NBD, though, the tears streamed down my face. I’d broken through some sort of weird mental barrier, and it was a huge relief. I’d done it, even though I didn’t want to, and didn’t want anyone else to, and didn’t want to deal with it at all. It was all okay. (I don’t think it hurt, either, which was a good thing.)

Finally getting up the nerve to give a shot in my stomach totally built my confidence around being able to do d-things myself, and do them well. My mom knew what she was doing. I didn’t realize that at the time, but I sure do now.

wego Health Activist Writer’s Month Challenge, Day 28: The First Time I…Write a post about the first time you did something. What is it? What was it like? What did you learn from it?


what’s my tagline? #hawmc day 26

April 26, 2012

“a girl with a smart mouth, a dumb pancreas, and some thoughts on living with type 1 diabetes.”

That tagline pretty much says it all, as far as I’m concerned.

I got in trouble a LOT when I was little for talking, talking a lot, talking too much, talking when I wasn’t supposed to. Often I was saying things out of a “smart mouth,” or “too smart for my own good,” or just being a “smartypants.”

To me, that just means that I say what I mean, or what’s obvious to me. I wasn’t (usually) trying to push anyone’s buttons or get myself in trouble. My Facebook About page used to say under Languages that I’m fluent in sarcasm. Sarcasm, or the ability to be a smartypants, is indeed a language. Mark Z. and co. took away that option from the selections for Language. I wholeheartedly disagree with that decision.

Add type 1 diabetes to a kid with a smart mouth, and you get smartDpants. I call(ed) it like I see (saw) it. For instance: the exchange diet never made any sense to me, and fearing sugar (or paying for it with guilt and/or exercise) didn’t, either. I somehow felt carb counting deep inside me many years before anyone ever told me about it, but that didn’t do me any good. Except I knew that I actually COULD have a cupcake, if there were enough insulin to “pay” for those carbs, and it wasn’t going to kill me to do that.

Saying that kind of thing to medical professionals in the early 80’s also got me the labels of “emotional eater,” “noncompliant,” and as I would be reminded multiple times over, a “smart mouth.” Somehow that made them feel better than if they had taught me about insulin-carbohydrate ratios and insulin sensitivity. Go figure. I guess a lot of them were still making their patients use sliding scales, so maybe I shouldn’t be so hard on them. Except I am.

If my mouth is smart, then my pancreas is the complete opposite. I’m SO not thrilled with my pancreas, even though I know I should really be pissed at my autoimmune system for attacking it, if I were going to go all the way with this description. It feels better to me to have something concrete to be mad at, and my pancreas fits the bill. The autoimmune system is too dispersed to really focus my pissedoffedness at it. Sorry, pancreas. I know that DNA really didn’t do you any favors, either.

Finally, “some thoughts on living with type 1.” That’s what you get, here at smartDpants. My life, how I live it, how type 1 fits and doesn’t fit into it, and what I think about that. Sure, I’ll throw in some feelings, too. Evidently, according to some previous medical professionals in my life, I am emotional 😉

wego Health Activist Writer’s Month Challenge, Day 26: Health tagline. Give yourself, your blog, your condition, or some aspect of your health a tagline. Make sure it’s catchy!


the day she fell asleep in the pool #hawmc day 25

April 25, 2012

Summer 1980. She was seven years old, and having a great vacation so far. Swim and golf lessons, days spent at the pool with her besties, long long hot days, tons of fun and giggles and good times.

Except she could never get enough to drink. Seemed like she was always standing in front of the refrigerator, taking long drags on the big bottle of cold water her mom kept in there. She couldn’t take the time to pour it in a glass, either. (Sorry, Mom!) Just needed to take in as much as she could at one time. Sometimes she felt like she had a bottomless thirst that would never be quenched.

And then she’d have to run to the bathroom, almost immediately after drinking. Those trips were a bummer, and they were required so often! She wondered why the cold water couldn’t just do its job and get over itself.

Then she took another loooooooong drink.

And went to pee. Again.

Swim lessons were several days a week, early in the morning. She started taking lessons when she was a toddler, so she knew her way around a pool and loved it. They were learning kick-turns, dives, and practicing cool emergency survival things like turning jeans and shirts into flotation devices and wearing them while treading water for several minutes at a time. There would be a test at the end of the summer.

She was starting to get annoyed when she had to get out of the pool several times each lesson to pee. Again. What was going on?

Golf lessons were even earlier, just once a week at 7am. She’d go with a couple of her best friends, and they’d always play an entire 9 holes after the lesson was over. She quickly learned exactly where the restrooms were throughout the course, and started worrying that somewhere on the back 9 she’d get stranded and wet her pants.

She planned how she could ask someone in one of the houses lining the course if she could use their bathroom. And made excuses with her pals about why she didn’t want to play an entire 18. (It was 1980. People didn’t carry water bottles around with them all the time back then. She would either die of thirst, or pee all over herself, or both, whatever.)

When she was at home, she began sitting down on a big comfy chair in the living room. It was on her path halfway in between the refrigerator and the bathroom. She could rest for a minute. Sometimes she’d lean back and close her eyes. Ahh. Rest was good.

Sometimes, she’d open her eyes and realize she’d been asleep for several minutes. Or a half-hour. Or longer…an hour? What?

Confusion. Annoyance. This didn’t make any sense.

On Friday, June 13, her mom and her 3-year-old brother took her to swim lessons per usual. There were lots of contests and races that day, with kickboards and without, practicing various swim strokes back and forth across the full length of the pool. Good times.

She gripped a kickboard and kicked along, enjoying the water on her face. No good drinking THAT water, she thought to herself.

The water was really comfortable, in fact. Like lying in a cloud. She wouldn’t even have to kick that much. Maybe she could slow down a little. How many more lengths did she have left? So…comfortable…so…tired…maybe she could just stop for a little bit…and float…

With her face down in the water? It didn’t matter. She just needed to rest.

She pulled herself up without breathing in any water and trudged slowly up the steps in the 4-foot end. Weakly dropped the kickboard on the pool deck and fell into her mom’s arms. She was pretty incoherent by this time. Her mom wrapped her in a beach towel, took little brother by the hand, and put them in the car. Mom drove directly to the ER.

She had some trouble holding her head up in the car on the way there. She tried to keep it together, but her eyes kept rolling back in her head. She saw and heard people-nurses and doctors-coming in and out of her curtained area in the ER. The lights were super bright, she could just close her eyes. Her brother was with her mom at the end of the bed, and they seemed like a looooong way away. She was still so tired. She didn’t feel the IV go in her hand. It was just easier to close her eyes and rest. Blissful.

Ketoacidosis.

Coma.

About 4 days later, she opened her eyes and focused. Her parents, and brother, and grandparents were there with her. She wasn’t so crazy thirsty anymore. She could hold her head up. Must have finally gotten enough rest.

That’s good, because a whole new life was waiting for her and her loved ones. Insulin. Shots. Exchange diet. Urine tests. A whole new language.

With that, smartDpants was born. She just wouldn’t realize it for another 31 years.

 

 

wego Health Activist Writer’s Month Challenge prompt for Day 25:  Third person post. Write about a memory you have but describe it using the third person. Use as many sensory images (sights, sounds, textures, etc) as you can. Don’t use “I” or “me” unless you include dialogue.


negative. again. #hawmc day 23

April 23, 2012

 

Lately, a lot of the blogs I think about writing are about something I’m really tentative about putting “out there,” here, on this page. That would make it real, and something I have to deal with, and while I put on this face of smart snark and usually love that part of me, I haven’t been able to get there yet with this particular topic. But I’m tired–really, super tired–of carrying it around with me. While I still don’t know the answer (and it pains me to even say that), or what I’m going to do or how I’m going to deal, I have to put this baggage down. Here and now.

So here it is: I was supposed to be pregnant by now.

I was supposed to have lots of fun and challenging and joyful and interesting stuff about being pregnant with type 1 diabetes to blog about. Maybe I’d even have given birth by now…it’s been such a long time (in my head, anyway), if the first IUI had worked a little more than a year ago and everything had gone well and according to plan, there would be a baby in the house now.

Not so much.

My life partner and I are both women. So it takes a ton of money, time, and mental and emotional energy in ADDITION to all that it takes to keep the diabetes in line, in order to try to get pregnant. Selecting and purchasing frozen sperm. Making appointments with fertility docs; having lots of ultrasounds; taking fertility meds (pills) that make my BGs go absolutely CRAZY HIGH and make me absolutely insulin resistant; extra shots of fertility meds. Then the IUI procedure (a different kind of shooting up than the type 1 kind, for sure!) and a couple of weeks of trying to forget that we’re waiting, while taking more hormones that also keep the BGs riding HIGH HIGH HIGH. Then there’s the stress from waiting and trying not to remember, that awakens the emotional, disordered eating patterns and also contributes to the difficulty of keeping the BGs down.

Throughout it all, I’ve been trying so hard to keep my diabetes “control” much tighter than ever before. I got my HbA1c down to 6.0 (an average of about 120 mg/dl) in December 2011 before we started trying, and it’s been between 5.8 and 6.0 since then. My target BG  is 100. I did, and do, this in order to keep getting the thumbs up from the endo so I can keep visiting the fertility docs. I honestly don’t know if I will be able to keep the supertight control going if I’m not doing it in pursuit of the pregnancy goal. I wasn’t able to do it, or didn’t care enough to do it, before I wanted to get pregnant.

Accompanying all of the “regular” type 1 crap, the “managing diabetes while trying to get pregnant” crap, and the “trying to get pregnant for the first time at age 39 with hormones and IUI” crap, six times in the last year, there’s been the total disappointment. Frustration. Grief. Pain. Anger. Feeling hopeless. Like a failure. Like there’s something wrong with me. Every time I wasn’t successful.

Wait, all of that kind of fun was supposed to be from type 1 diabetes. I’ve had all of those feelings since I was diagnosed with t1D thirty-one years ago. And for the last year, I’ve felt twice as much of those feelings, over and over again. It’s sucked. A lot.

I found the DOC in 2010 when I was first ready to move forward with taking better care of my diabetes in order to get pregnant. My HbA1c was about 8.0 then. All I had in my head was stupid “Shelby, drink your juice” Steel Magnolias, kidney failure, and death with regard to having type 1 and getting pregnant, much less having a baby. The first blog I found was about a young woman’s diabetes-related complications and complicated pregnancy with type 1, and it scared the living crap out of me. It took me a few more weeks after that to get up the courage to google “pregnancy and type 1 diabetes” again. That’s when I found Kerri. MelissaLyrecha. And began to feel like yes, there was some hope and maybe I COULD do this.

It’s not fair (stamp foot) that I finally learned/realized I wouldn’t have to pull a Shelby and die in order to give birth, decided to pull myself together and take care of myself and my D, and got the whole type 1 pre-pregnancy-prep thing down pretty well for more than a year, yet…nothing. Not. Fair.

I did the 6th negative pregnancy test a few weeks ago. Negative. Again.

Not. Fair.


dinner invites #hawmc day 19

April 19, 2012

People with diabetes are amazing dinner guests. We always know, or can check on calorieking.com or some mobile app, how many carbohydrates are in any food and beverage. We will bring, among other yummy items, the essentials: diet coke (or pepsi), cupcakes, bacon, holiday candy, and/or brownies. And we’ll mesmerize dogs, cats, babies, and toddlers with potential assortments of buzzes, rings, beeps, and psssts from various diabetes technology acting and interacting throughout the meal.

I would so love to have dinner with good girlfriends from Camp Diamont, the camp for kids with diabetes in Montana that I attended the last week in July every summer when I was 8-14. Amy Jo, my BFF from my first year and all the years after; Melanie, the girl who I was convinced hated me until we were counselors together and I found out what a badass person, librarian, and friend she is; Heidi, the “cool girl” who let me live with her years later when I did a summer internship in Seattle; Jodie, the fun, sweet, awesome girl from my hometown who later became the program director at Diamont; and Erika, the sweetheart from a small town north of my hometown who (I found out 20+ years later on Facebook) grew up with one of my besties in high school.

I would also love to have dinner with a few campers who have a special place in my heart, from my older years as a camper, and then from my years as a junior counselor and counselor: Jami, Kim, Kristy, Justine, and Mark. I actually got to see both Kim and Mark last summer, and have meant to blog about it ever since. It’s on my list. Seeing each of them last summer was a majorly major highlight. It was as if no time had passed–yet there we were, all grown up and such.

Then there’s the dinner with 5 of my good friends from when I was a counselor for several years at Camp Diamont: Bill (amazing camp director), Cathy (Type Awesome), and Mark, Melanie, Jodie, and Heidi (see above–we were counselors together too!). Being a counselor at the camp that meant so incredibly much to me as a kid with type 1 was such an indescribable experience. As a kid, it was such a relief and a joy to hang out with 100+ other kids and normalize all the mess that is type 1 diabetes. As a counselor, it was that same kind of relief and joy, as well as an honor and privilege, to get to hang out and perhaps mentor or role model for ones younger than me. I loved it. It gave me hope, for them as well as for me.

Sigh. I’m feeling really happy after writing and thinking about getting to have dinner with all of these wonderful d-peeps. Love to you all, Diamont campers and counselors from 1981-1988 and 1990-1995. Best. Times. EVER.

I’ll bring the diet coke and the cupcakes.

This prompt is for Day 19 of wego Health Activist Writer’s Month Challenge: 5 Dinner Guests. Who are 5 people you’d love to have dinner with (living or deceased) and why?


arduously, painfully boring d #hawmc day 18

April 18, 2012

“There is only one thing that Lena could do. She could be so arduously, painfully boring that Effie would leave the next day. And that, at least, came naturally.” (Ann Brashares, Sisterhood Everlasting, p.143)

Type 1 diabetes is naturally arduously, painfully boring. It bores me to tears. From the day I was diagnosed on June 13, 1980, through my pre-teen, teenage, young adult years, and well into my 30’s, it bored the daylights out of me. Before I was exposed (and thrilled by, believe it or don’t) the data of my diabetes experience, I could not have cared less about doing all the things associated with caring for myself, over and over and over. Painfully boring! And it never ended! All of the monotonous things to care for myself STILL never end, but at least I’ve found some aspects of it that make me wonder…and wondering makes me question…and questioning makes me collect and compile and describe and list the data, and try to analyze it so I can tweak my care regimen and improve, sometimes. And that is good.

Some really rough numbers to illuminate the arduous and painful boringness of my type 1 diabetes:

I started testing my blood in about 1982. Let’s use an average of 3 blood tests/day from 1982-1990; 2 tests/day from 1990-96; 3 tests/day from 1997-2009, and 15 tests/day from 2010-present day. That’s about 41,000 blood tests. Just thinking about it puts me to sleep!

Incidently, it would also be 41,000+ lancets for each one of those blood tests IF I changed my lancet every time I tested. But I don’t. It’s too boring. 😉

Between the many years of hardly any or just flat out no blood sugar control, and the last couple years of attempted very tight control, my blood sugar is low–less than 70mg/dl–probably an average of about once a day. Over the last almost-32 years, that’s roughly 11,680 lows that needed treatment with carbohydrates. We’ll just ignore all the times that I overtreated lows due to my body feeling like it needed to inhale everything with sugar in my reach, and assume treatment with 15 grams of carbohydrate for each of those lows. That’s 175, 200 grams of carbs.

Okay, that number might be a little interesting (or gigantic and disgusting if you think about the entire amount at once). But the need to constantly feed, or treat, the lows, is boring. Especially since it works best for me to treat every low with the same kind of sugar (juicy juice apple juice box) so that I can track the results. Insanely boring, is what that is.

On the other hand, searching for new or different food to give me 15 carbs to treat my low is arduously boring and causes a whole lot of pain too. It takes too much energy to try and think of something else that works, and works well.

I’m just going to SWAG this next one and say that I’ve probably spent close to 384 hours (1 hour/month x 12 months x 32 years) on the phone with insurance companies and durable medical equipment/supply company billing departments, arguing about  prescriptions or pump supplies or test strips or insulin or endocrinologists or eye doctors or other services that were covered, at least to some extent, by my insurance coverage at that time, but billed incorrectly or just not billed to insurance, or not coded correctly, or just forgotten along the way by the insurance company.

Zzzzzzzzzzz…sorry, so boring. Again. And neverendingly so.

I feel really lucky that within the last couple of years, I’ve realized that what’s interesting–at least to me–is finding the trends in my diabetes numbers. What time of day am I high? Low? How many days in a row? But in order to do that, I have to go through the boring stuff and remember to test, and fill in my logsheet, and take time to look at it and figure out which options might work.

Remembering the interesting parts, and taking the time to find them interesting, helps me not blam my head against the wall with the arduously painfully boring d-stuff.

Cupcakes, glitter, unicorns and rainbows help too.

This post was for Day 18 of wego Health Activist Writer’s Month Challenge. Open a book. Choose a book and open it to a random page and point to a phrase. Use that phrase to get you writing today. Free write for 15-20 without stopping.


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