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


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.


madlibbing with type 1 d #hawmc day 21

April 21, 2012

mostly cupcake’s mostly cupcake

fast i have never danced, intensely beyond
any rainbow, your carbs have their sweet:
in your most crazy diabetesonlinecommunity are things which thrill me,
or which i cannot fight because they are too true

your look profusely will move me
though i have thought myself as a high HbA1c,
you see always endocrinologist by endocrinologist myself as sugar listens
(engaging imaginatively, slowly) her low friend

or if your love be to struggle me, i and
my d-peep will polka very often, rarely,
as when the carb of this insulin test
the BG purposefully everywhere monitoring;

nothing which we are to log in this pump calculates
the glitter of your sparkly unicorn: whose averages
enjoy me with the spirit of its sweatabetes,
running dietcoke and dblog with each drinking

(i do not guess what it is about you that feels
and loves; only something in me giggles
the soul of your type 1 is fluffier than all sugar)
bacon, not even the frosting, has such bright powers

– smartDpants & e.e. cummings

Create Your Own Madlib on LanguageIsAVirus.com

Day 21 of wego Health Activist Writer’s Month Challenge: Health Madlib Poem. Go to: http://languageisavirus.com/cgi-bin/madlibs.pl and fill in the parts of speech and the site will generate a poem for you. Feel free to post the Madlib or edit it to make it better.


miracle? no. cure? no. love? yes. #hawmc day 20

April 20, 2012

The prompt for today really set me off, and not in a good way. I don’t like to think about pretending there’s a cure for type 1 diabetes. I don’t find it cute or funny. My family and I didn’t know any better, back in 1980 when I was diagnosed with type 1, and we heard the doctors loud and clear when they said “they’re working hard on this, and there will be a cure for it in 10 years.” 1990 came and went, no cure. 2000, same deal. 2010…yeah, here we are. And still are, in 2012.

I don’t have any hope for a cure–a lights-blinking, sirens-roaring, crowds-cheering switch that turns my pancreas back to “ON” and makes it do what it’s supposed to do–in my lifetime. Maybe I did almost 32 years ago. But that hope faded away with each decade that it still didn’t appear. I’m jaded now. It’s been too long.

Google has 52.6 million potential results for “cure diabetes.” Examples of those results include: Bariatric surgery, cinnamon, 3 days in Europe with stem cells (sightseeing? partying? strolling the countryside? Those cells sure do like to get around), “diabetic food,” apple cider vinegar, and all kinds of so-called “natural substances” that sound super scary to me. I see this crap advertised everywhere: in the magazine kiosk in the checkout line, on the side of my Facebook page, in my spam email box, on TV and from the nutjobs who spam me (and everyone else) on Twitter. There are all kinds of wackos hawking lies and taking advantage of people in really dangerous ways, and I don’t want anything to do with it.

On top of that, there are those who think that if we diabetics–every last one of us–just ate less/better/differently/organic/vegan/low-carb/no-carb/low glycemic index, and exercised more/every day/at least 30 minutes/60 minutes/90 minutes/every day/aerobic/anaerobic/5k/10k/half-marathon/marathon/triathlon, if we just tried harder/cared more/loved ourselves/did it for our kids/did it for our partners/did it for our parents/listened to our doctors/listened to our parents/listened to the media, we’d be cured. The stigma, stereotyping and condescension that comes from this type of thinking about those of us with malfunctioning pancreata and autoimmune systems is painful. It’s everywhere (check out Kerri’s recent experience). And it hurts. It hurts because we didn’t do anything to deserve that kind of thinking and treatment. A part of our bodies doesn’t work the way it’s supposed to work. Our bodies attacked that part. If I could have stopped it, I surely would have. But I couldn’t. And I can’t do anything about that now. I certainly can’t do anything to reverse it, cure it, or make me “normal” again.

If I had a dollar for every one of those stupid Google results, maybe we really would have a cure. So here’s the part where I mention the Diabetes Research Institute, and Faustman Lab at Massachusetts General Hospital, among others, that are working super hard in all kinds of insanely wonderful ways to get us closer to a cure. If I felt like hope would get us there, I’d send the hope their way. (Along with the $52.6 million, too). I’m all about the brilliant endocrine scientists doing their incredible research. I’ve just been burned too  long on this one so far, so instead, I’ll just be thrilled when they have results to share that can make significant positive changes in this body, in our bodies, and in this disease.

So if I won’t even pretend that there’s a cure, what’s left? It’s the love and support from my Type Awesome web: my partner A, daughter Ms. Diva, my mom, dad, stepmom, brother, sisters-in-love/law, brother-in-love/law, nephews, cousins. Friends IRL. Dr. WonderfulEndo and her staff. AND, what I’ve found and experienced from the Diabetes Online Community IS nothing short of lifesaving. People I’ve never met, who will ask and answer and check in and giggle and hold my hand and listen and care…all in the virtual universe of the #DOC. All of these folks are my miracle. It’s miraculous that we’re here, and even more miraculous that we find and have each other.

Cure, shmure. I’ve got d-peeps and a Type Awesome web of support and love.

This prompt is for Day 20 of the wego Health Activist Writer’s Month Challenge: Miracle Cure. Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be
sure to include a disclaimer 😉


what’s my style? #hawmc day 15

April 15, 2012


my writing style

I’ve never really thought about my writing style. I just think that I sit down and do it. Upon thinking about this prompt, though, I realize that I’m writing blog posts in my head all the time. Before #hawmc began this month, I hadn’t actually posted anything to my dblog in forever…or 5 months, however you want to look at it. Not because there wasn’t a lot going on. There was. And I blogged about it, nearly every day…in my head.

I write brilliant blogs in the shower, during my hour-long commute to and from the office, and random other times I probably should be doing something else. I also write Facebook updates and tweets in my head, too.  It sounds a little crazy, but I’m just always writing. In my head. Once in a while, I remember to post them.

It’s so much easier for me when there are prompts to answer with a post. Left to my own devices, and if I haven’t already worked something all out in my head, I can sit and think about topics for hours and have nothing to show for it. I love figuring out how to answer a question and then answer it. Having to decide upon, or worse yet design, my own question to answer and then go about writing the answer to it is not my favorite thing. Thus, I’m having a great time with the wego Health Activist Writer’s Month ChallengeResponding to really cool prompts that make me think and are fun to answer? Yep, I’m your girl. Then the words just flow.

When I was growing up, in elementary, junior high/middle school and high school, I used to love to hand write my book reports and class projects. Even in high school, when I had to type papers, I would love to hand write the first several drafts until I got it just the way I wanted it, and then I’d type it. Somewhere in my four years of undergrad, however, that changed. I began brainstorming and writing first drafts at the computer, and the handwriting that I used to love as my process started dragging me down. Slowly but surely, the handwritten first drafts drifted away. More and more, I was sitting down at my big old PC and drumming out a paper. And I’ve only gotten stronger with that process ever since. (The old PC, thank goodness, gone some time ago.) It’s like my brain made a big switch. Now it’s easy for me to think as I write at the computer, and trying to hand write something gets in my way. Makes me a little sad to think about it, but it’s just how it is now. It’s okay.

Titles go one of two ways: either they are completely perfect and tight and awesome from the very beginning, or they’re just there–nothing special. I don’t spend much time on them. I’m in awe of bloggers who have perfect titles for every post. I have a thing about including “d” in most of them, for diabetes, and that may or may not stick around for very much longer. At the moment, it’s fine.

Photos and images, however, really slow me down. I’m a very verbal and literal person, so the words come first and strongest for me. It’s something to work on in the posts to come–more images, more visual interest, to make these pages more attractive and fun. I get it. It’s just not my forte.

I write best when I’m not feeling pressured about a zillion other things going on in this life, which seems to happen much more often than I’d like. I write best when it’s relatively quiet, and either later in the evening or first thing in the morning. I also write best when I ignore social media and just focus, even for a short while. It’s always amazing to me how much I can actually get done when I sit down, sit still, and focus. 30 minutes goes a long way.

I definitely write best when my BG is neither too low nor too high. When it’s too low, I can’t focus on anything, much less write. I also get very paranoid and start freaking out that I’m not a good writer, researcher, or thinker and that everyone knows how bad I am. When my BG is too high, I just want to sleep and it feels like my veins are full of hardening concrete. I’m also grumpy. I just want to close my eyes, not helpful when I want/need to write.

My writing style is blunt and personal, active and passionate. I write just like I think, and I write like I talk. What you read here is what you get. (Also: grammar, spelling, and info accuracy are key.) I’m all about expressing big ideas and real feelings. I’m not afraid to say/write something that pushes buttons, asks challenging questions, or makes people think. Most of all, I hope my style connects with people–especially other people with diabetes, especially people with type 1 diabetes and/or people who love, work with, or just know people with type 1 diabetes.

I’m fierce about our stories being told, listened to, and acted upon. I hope my writing style reflects and achieves that fierceness.

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This post is part of the  for Day 15: Writing with Style. What’s your writing style? Do words just flow from your mind to your fingertips? Do you like handwriting first? Do you plan your posts? Title first or last? Where do you write best? Check out more posts from the Health Activist Writer’s Month Challenge at wego health’s Facebook page.


10 things I couldn’t live without #hawmc day 13

April 13, 2012

 

 10 Things I Couldn’t Live Without (type 1-style)

10. digital logbook spreadsheets

9. Dromedaris & Asics shoes

8. diabetes online community (#DOC), every single last one of you! 🙂

7. dr. wonderfulendo

6. Dexcom continuous glucose meter (CGM)

5. OneTouch Ping blood glucose meter

4. Animas Ping insulin infusion pump

3. family & friends

2. My partner and our daughter.

1. Insulin

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Things I Couldn’t Live Without (type 1-free style)

10. Pilot G2 gel pens, blue, fine point

9. fleece: jackets, pants, gloves, scarves, blankets, whatever, I love it

8. pluots, the red ones (they’re coming into season next month!!! woot!!)

7. Big Bang Theory, Friends, and Sex in the City reruns

6. InNOut cheeseburgers, protein style

5. Cupcakes.

4. Spotify

3. honeycrisp apples

2. Facebook

1. friends, family, and the #DOC (of course they go on both lists!!!)

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BTW: Happy weird not-quite-diaversary-to-me! Friday the 13th is the unlucky day I was diagnosed…and in another 2 months it will be my actual 32-year diaversary. There it is.

This prompt is for the wego Health Activist Writer’s Month Challenge. The prompt: Write a list of the 10 things you need (or love) most.

Want more? Check out all kinds of wonderful posts from tons of supercool health activist writers at wego health’s Facebook page.


why I write about my health (#HAWMC day 4)

April 4, 2012

 

I write about my health because…

It helps me understand my own story with type 1 diabetes.

It helps me remember parts of my story from long ago.

It’s a good challenge for me.

It’s an emotional release.

Maybe some parts of my type 1 diabetes story are similar to other people with diabetes (PWD).

Maybe parts of my story can be helpful to others, either other PWD or parents/loved ones of PWD.

It helps me think through some things about type 1 management issues I’m experiencing.

Sometimes I’m a pretty good writer.

Maybe reading my story will help some people without diabetes understand what it’s like to live with this disease.

It’s fun to write.

It’s fun to read people’s comments.

I like to read other people’s blogs.

I feel like I should offer something to the greater diabetes online community since it’s given so much to me.

If I don’t write about my story with t1d, no one else will!

 

This post is part of the wego Health Activist Writer’s Month Challenge for Day 4: Reflect on why you write about your health for 15-20 minutes.


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