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.


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.


time capsule (#HAWMC day 1)

April 1, 2012

For this first post for wego Health Activist Writer’s Month Challenge, I am pretending that I’m making a time capsule of me and type 1 diabetes that won’t be opened until 2112.There is so much paraphernalia associated with my t1d life, and most all of it absolutely necessary, that I hope the time capsule has LOTS of room! Here are just a few of those necessary items:

One Touch blood glucose test strips; sharps container; apple juice box (4.2 oz./15 carbohydrates); Tegaderm tape; cute little Clinique GWP bag for d-supplies; Dexcom continuous glucose monitor sensor; SkinTac extra adhesive; lancets; insulin pen; poker; insulin pump reservoir; OneTouch Ping blood glucose meter; Novolog insulin; Dexcom Seven Plus continuous glucose monitor; Animas Ping insulin infusion pump.

(do you love the other juice boxes on the nightstand in the background?)

The Most Absolutely Absolute Necessities

Of course I forgot to include a few other absolutely necessary items in the photos: diet coke (!!!), calorieking book/app, and glucose tabs, sure.

Finally, my most recent hemoglobin A1c results, on a big explanatory handout from my endocrinologist, dr. wonderful. I just got it last week, so it’s at the forefront of my d-thinking.

March 2012 HbA1c

I hope no one in 2112 has to know what an HbA1c is. I have no idea what people in 2112 will think of all the d-stuff in my time capsule when they find it…the one hope I have is that they look at it from an archeological perspective–that diabetes will be a long gone historical lesson by that time, and none of the items that are absolutely necessary to my life are necessary anymore. Cure by 2112? Yes. Please. Sooner? Even better.

This is Day 1/Post 1 for the wego Health Activist Writer’s Month Challenge (#HAWMC). Woot! 


30 things about my invisible chronic illness

September 18, 2011

I thought I’d use this meme to get back on that blogging horse. These are my 30 things, in honor of National Chronic Invisible Illness week.

1. The illness I live with is: type 1 diabetes

2. I was diagnosed with it in the year: 1980–on Friday the 13th of June.

3. But I had symptoms since: a few months before. My mom took me to the doctor, who said it was just the flu. Maybe that’s what kicked my immune system into overdrive, but I drank and peed gallons of water and lost tons of weight and had fruity-smelling breath and slept all. the. time. for months before being diagnosed in the ER and going into a ketoacidotic coma for 4 days.

4. The biggest adjustment I’ve had to make is: having an uninvited, unwanted entity present in my life every second of every day, and having to pay attention to it all of those seconds.

5. Most people assume: 1. that I can’t eat any sugar 2. that I “got” type1D because I ate too much sugar or weighed too much 3. that my pump is a pager 4. that my CGM (continuous glucose monitor) is an oddly misshapen cell phone 5. that I’m going to have to have my feet amputated…and there are so many more assumptions.

6. The hardest part about mornings are: feeling like absolute crap if my blood sugar is higher than 150 or lower than 70, and then the extra time it takes to address either one of those annoyances when I really don’t have time in the morning agenda for any “extra” things. Being late for work or weekend plans if I have to recover from either being high or low in the morning sucks.

7. My favorite medical TV show is: I really loved House for a while. Medical mysteries are fun if they’re not my own.

8. A gadget I couldn’t live without is: the duo of my blood glucose meter, which I use to check my blood sugar about 12-15 x/day, and my insulin infusion pump, filled with Novolog insulin. My life on MDI (multiple daily injections) was really, super terrible for many years until I tried the pump. My body seems to only want to notice short-acting insulin, and basically ignores any medium- or longer-acting insulin.

9. The hardest part about nights are: if/when my Dexcom (CGM) just. keeps. screaming. or. vibrating. every. hour. or. more. throughout the night, due to blood sugars that are riding either higher or lower than the set maximum and minimum on the device. Good times.

10. Each day I take 3 pills (lo-dose aspirin, generic allergy med, and an anti-inflammatory called meloxicam),  3 vitamins (a multi- and 2 Vitamin D supplements), and infuse about 50-60 units of insulin into the layer of fat below my skin throughout the day. 

11. Regarding alternative treatments I: think they can add a lot to one’s overall wellness and health management, but they aren’t treatment for type1D. Nothing is going to kick my pancreas into making insulin again.

12. If I had to choose between an invisible illness or visible I would choose: there’s really no good answer to this question.

13. Regarding working and career: I’m for it. With type1D, I’m insanely grateful for the opportunity to get medical insurance through my employer. The D hasn’t given me too many problems with regard to my work, unless my blood sugar is low and I have to read or write or speak or think. Then I have to wait 15-20 minutes so that I can see okay and my brain can make sense of what I’m reading.

14. People (without type1D) would be surprised to know: how difficult, and how isolating, type1D can be. For many years I tried to hide and ignore how much space taking care of t1D takes in my life.

15. The hardest thing to accept about my new reality has been: it’s been 31 years now, so the reality isn’t new. Back then, it was hard for me to accept that I wasn’t like the other 7 years olds around me, and that I was going to have to carry this baggage (literally and figuratively) for the rest of my life. Now, the hardest thing to accept about my reality is that it impacts those who love me, and that there is never a break from it ever.

16. Something I never thought I could do with this illness that I did was: ? I really haven’t considered anything that I’ve done, or haven’t done, in context of having type1D. I don’t want to climb Mount Everest or run with the bulls, or skydive, but if I wanted to do those things, I’d figure out how to do them with t1D.

17. The commercials about this illness: aren’t about the kind of diabetes I have.

18. Something I really miss doing since I was diagnosed is: leave the house without a ton of freaking supplies (juice, glucose tabs, blood glucose meter, finger poker, canister of test strips, insulin pen, insulin bottle, pump tubing, pump reservoir, alcohol swabs, CGM sensor, lancets, syringes) in my purse, in my work bag, in the car, in a fanny pack…to just leave the house with only keys and ID is but a dream.

19. It was really hard to have to give up: eating without shame; eating without calculating carbs and insulin and exercise and stress and…

20. A new hobby I have taken up since my diagnosis is: reading d-blogs; tweeting w/ the DOC (diabetes online community); blogging my own d-blog; taking care of myself and my D.

21. If I could have one day of feeling normal again I would: run, run, run without worrying about going low. take several “free” showers (no pump sites or CGM sensors). go out and make someone else drive so I wouldn’t even have to carry keys/ID. buy and wear something that actually fits my body, something with no pockets.

22. My illness has taught me: how to take care of myself. how to put my own needs first. that I’m actually not in control of most things in my life. that numbers are just numbers, they don’t hold a value of my worth as a type1D, or as a human. how to ask for help. how to advocate for myself with medical providers. how to advocate for others. an understanding of difference, in others and myself, whether with regard to invisible illness or many other ways that people are different and treated or made to feel badly because of that difference.

23. Want to know a secret? One thing people say that gets under my skin is: “Are you supposed to eat that?” or “My (family member) had diabetes, and lost her/his toes/foot/leg/vision/nerves/etc.” Don’t say those things to people with t1D. Just don’t.

24. But I love it when people: ask intelligent questions that let me know that they are interested, and that they know there are things they don’t know about t1D

25. My favorite motto, scripture, quote that gets me through tough times is: Just keep swimming, just keep swimming“~~Dori, in Finding Nemo. “Steady on“~~song (one of my very favorites) by Storyhill. “I’m on the edge of glory”~~Lady Gaga.

26. When someone is diagnosed I’d like to tell them: Welcome to the club that no one wants to be in, but most of us here are pretty darn cool folks. Simply because all of our pancreata decided to konk out, we’ve got each others’ backs–which is a pretty incredible thing. You will be okay, even though it may not feel like it. You are not alone, ever. You can do this.

27. Something that has surprised me about living with an illness is: As much as I hate this, I’m pretty good at it. I’m organized, (usually) prepared, and I like to research and learn new things. I like to solve problems and find useful resources. I like technology that’s useful and easy to use.

28. The nicest thing someone did for me when I wasn’t feeling well was: bring me an iced drink, sit with me and let me feel what I was feeling.

29. I’m involved with Invisible Illness Week because: I have type 1 diabetes, and I love memes.

30. The fact that you read this list makes me feel: thankful.


DSMA blog carnival for july: diabetes tech

July 28, 2011

I’ve been procrastinating and putting off blogging for more than a month now, without any really good reason. To add some oomph with much-needed motivation to get me over the nonblogging hump, I checked out the Diabetes Social Media Advocacy (DSMA) Blog Carnival prompt for July: (Thanks, Karen at Bitter~Sweet Diabetes, for the reminder! It WAS hot-but not melted!)

What improvements or adjustments would you make to current [diabetes] technology?”

Some context: I currently am privileged to be able to own and use an insulin pump with blood glucose meter/remote (Animas One Touch Ping), and a Dexcom 7plus CGM (continuous glucose monitor). I’ve been using those 3 major d-gadgets for about a year. Before that, I was a Minimed pumper since 1994, and a One Touch meter girl since waaaaay before then. I demo’d the Minimed Revel along with the Ping before deciding which systems to purchase convince/beg my third-party administrator to approve for coverage last summer. I tote around a CalorieKing 2011 book even though I also have the CalorieKing website bookmarked on every web gadget I own.

After all that prelude, here’s my wish list for diabetes technology:

1. Artificial pancreas/closed-loop system. Yes, please! I understand, we’ve got a while more to wait for this one. In the meantime…

2. If they are separate gadgets, then insulin pumps, BG meters, and CGMs should be on speaking terms with each other, and they should all speak and understand the same language. They should work TOGETHER, since they are all part of the same system. The one I use to manage my d-life.

3. Excellent, easy-to-use, data management systems. The “systems” associated with all 3 of the devices I currently use are, to put it really bluntly, crappy. Three different kinds of crappy. How the companies manage to develop such yuck is beyond my comprehension. They’re not user-friendly. They don’t use the same standards. And of course, they don’t look the same once the 3 different data sources are downloaded. See next point for more on this craziness.

3.5 The absolutely separate and specific INANE requirements for downloading the data (“dongle,” anyone? really?!!). Claire’s hilarious and unfortunately accurate post covers the intricacies better than my exasperated eye rolls can hope to convey. All I have to say is: Wireless. Seriously.

4. In this time of All-Apps, All The Time, I wish for an app that would suck the data from the 1 insulin pump/BG meter/CGM system and display the most useful, most important data that I need to make my daily–sometimes moment-by-moment–life D-decisions. I wish that app could be accessed from any device, Apple, Android, whatever. And I wish that it wouldn’t just do a big ol’ data dump with a bunch of averages. Some data points are most useful and helpful, and I shouldn’t have to dredge and yank them out myself.

5. The BG meter/remote should be able to operate all of the insulin pump functions. For example: I should be able to track my history for boluses, total daily dose, basals, primes; review and edit my basal rates; and set temporary basal rates. It’s crazy to currently be able to see so many different functions on the meter/remote, but not the same functions I need to work the pump. Especially with the following problem I’ve experienced a lot lately:

5. With its reverse type (white on black background), the Ping pump screen is completely unreadable in the light of day. I went camping last weekend, and couldn’t see to give a bolus directly on the pump when outside (most of the day, when one is camping) or to set a temp basal (important for me when hiking, in hot sunlight, in the afternoon). Luckily, I had the meter/remote nearby, so I could at least do the bolus, but not the temp basal. Major drawback!  No device screens should use reverse type.

6. The carb counting food list integrated into the system needs to include every product available at any Trader Joe’s.

7. Glitter. Rainbows. Unicorns. Cupcakes with sprinkles. Medtronic has a good start here, but that’s just a start. The possibilities…necessities really.

8. My top wish/priority for diabetes technology: Affordability. Availability. Access. Worldwide.

This post is my July entry in the DSMA Blog Carnival.  If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2011/july-dsma-blog-carnival/



d-eyeballs

May 25, 2011

There’s really nothing like the fear leading up to an impending opthamologist appointment. About a week before the date, I start having random moments of freakishness where I may start thinking that my eyeballs have stopped working. I wig out when my BG hits anything more than 140, and I convince myself that some Really. Bad. News. is inevitable. I try to remember to breathe, not always successfully.

So last week when I went to my first appointment with new Dr. D-Eyeballs, I was a bit of a mess. Perfectly normal. I asked for a referral from my relatively new Dr. WonderfulEndo, whom I love, so I had hope that Dr. D-Eyeballs would also be wonderful. I was also prepared for massive disappointment and eyeball crisis. It’s just easier to be ready.

In the last 31 years I’ve had opthamologist Dr. Crappy-s who have asked me if I’ve “been good” to my eyes. Ones that berated me for whatever my last HbA1c was. Ones who tried to scare me with horror stories of retinopathy, glaucoma, macular degeneration, and other complications in people with type 1 diabetes. And then there were the ones who didn’t even ask about my type 1. Admittedly, I have a narrow range of acceptable and appropriate statements that opthamologists could say to me without sending me over the edge. But I’ve heard the entire gamut of possibilities, most of them terrible.

Not my new Dr. D-Eyeballs! She’s totally ah-may-zing. She’s the clinical research director for the practice, brilliant, and informed/respectful/totally competent re: type 1 eyes. I’m so thankful when I get the opportunity to see a good medical provider, and she is one.

Cut to the great news from last week’s appointment: No retinopathy, no other d-eye problems. After more than 3 decades with D.

It’s hard for me to believe. I wanted to ask the doctor if she was absolutely sure. Really? Not one little blip? Even under the extra magnification? Are you SURE?! I kept waiting for the “BUT…”

Not this time.


10 things I hate about you, Diabetes

May 12, 2011

DBlogWeek2011Banner

10. It’s so damn expensive to manage type 1 diabetes. Between co-pays for  treatments/tests/prescriptions/supplies that is actually covered by insurance, and paying 100% for all of those things that are not covered by my insurance, not to mention anything non-medical that wouldn’t be covered by insurance (like exercise classes, exercise equipment, continuing care education, stress relieving activities, etc…) I’d probably have an extra $10,000/year if you (D) weren’t around. Bleh.

9. You demand too much attention. To “manage” you well, D, I have to think about you all. the. time. I spent a lot of years not thinking about you very much, with BGs and HbA1C levels that showed it. Now I want to manage you well–take good care of myself–and that takes constant attention to you. You’re spoiled and whiny.

8. You’re too much all about “no.” It’s not in my nature to think “No, I can’t have that. No, I can’t do that. No, I can’t eat that.” But that’s what you’re constantly yammering in my ear. And it took far too many years for me to figure out how to work around that, to empower myself to find solutions, ways that I can have things and do things and eat the things I would like to. But the fact remains, a lot of the time, I can’t do what I’d like to do: travel with just a wallet, keys and clothes; go outside and walk/run/hike without an arsenal of d-supplies; eat only when I’m hungry and exactly how much I feel like eating; tear off my clothes and have sex without thinking about the pieces of equipment hanging on my body; and on and on…

7. You hurt us, physically, emotionally, and spiritually. All the time.

6. You never take a break. Supposedly there was a “honeymoon,” although I never experienced it. After almost 31 years, I would think you’d need a vacation. I sure as hell do.

5. You get in the way. I’m always dropping something you require: meter, pump, CGM, various d-garbage, poker, test strips, juice boxes, flash drive w/ my logs on them, carb counting book…good grief. You’re everywhere, all the time.

4. You’ve given me rotten body image, messed with my head not only about the way I look but about ways I can improve how I look without hurting myself. I could have been a woman who automatically thinks good things about her body and the way it looks. In addition to the harmful messages all girls and women get about our bodies, you added on yet another complex level of hatred and harm. Awesome.

3. You completely fucked up my relationship with food for 30 years. I’ve barely started recovering from that, and am finally able to think of food as just what it is–fuel with specific numbers attached to it (carbs/fat/calories), which will influence other numbers in my body (BG, CGM, bolus rates, basal rates, time spent exercising, pounds of weight). Even though I asked for them for many years, none of my endos or primary care docs could refer me to a shrink or counselor who specialized in food and body image issues for girls/women with type 1 diabetes. They didn’t know of any. I finally feel like I’m doing much better, but seriously, no thanks to you.

2. You cause my partner, my 5 y.o. daughter, my parents, my brother, and my good friends a lot of concern, all the time. It’s exhausting for them too. Bad enough you’re always on my case, but why can’t you stop getting in my loved ones faces? You being around reminds me that I’m not like them, that there’s something wrong with my body, that there’s a part of me that will always need help.

1. I can’t control you, no matter how hard I try. Even with much “better” numbers like BG, HbA1c, and weight, you come right out with a whack to my head at any random time. There’s the 32 mg/dl that I don’t even notice that without CGM could do really bad; the 65 mg/dl that feels like I’m spinning right round and can’t realize that the juice in my hand needs to get into my mouth; and the 160 mg/dl that given my new, tighter management, feels like my blood is concrete and I’ve been run over by a truck. Never mind the random 257 mg/dl for no. good. reason. Like, I didn’t eat anything and my pump site is fine and all batteries are working and I’m not that stressed (or wasn’t, before the 257 came along). I do my best every day, and you will not be controlled or submit to me, as you very well should if you had any decent manners at all. Might as well call you Voldemort.

In the immortal and so satisfying words of Kathy Griffin: Suck it, Diabetes.


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