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 😉


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.


it’s not just a blog, it’s an attitude

April 29, 2011

I’m excited–and a little freaked out–about bringing my life, and my self, with type 1 diabetes (t1d) into the public. Not that I hide my t1d; that would be near impossible with all the various technology and unique behaviors that I use to make it through every day. But designating this specific, intentional spot just for my musings, rants, and wacky ruminations on this stupid disease that’s been a pain in my side for nearly 31 years? That’s significant. I’ve been working hard for a while now to get a better handle on my diabetes, to own it for more minutes out of the day than it spends throwing me against the ground. I don’t know if that’s possible, but I’m sure as hell trying.

And there’s that mouth of mine, going off with the expletive in the very first paragraph. That’s a thing with me–I have a mouth (and, truth be told, a brain) that likes to use sarcasm, critical analysis and certain snarkery to confront things/people that piss me off. Consider t1d engraved at the very toppety-top of that list. Plus, I believe we are all smarter than our messed-up pancreata. Hence, the name of the blog.

One thing: smart as I might hope to be, I definitely *don’t* know-it-all about t1d, even after 31 years and a name like smartDpants. That’s why I loooooove the Diabetes Online Community (DOC): There are just tons of cool folks writing blogs, tweeting, and messaging about their experiences and ideas, offering support for whatever our dumb pancreata throw our way. Totally awesome. Don’t know how I made it through the first 30 years of this disease without it.

The DOC was my collective inspiration to start writing about my life with t1d. Check the blogroll over there on the right, to find all kinds of amazing dblogs. Send me a note if you’d like me to include yours on there too. I’d love to see it.

How about you? What’s your attitude toward diabetes?


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