Are We Done Yet? (Venting the Silent Screams)

Last night I had an Epiphany: I am tired of thinking about diabetes.

Alas, what a useless revelation! Because pending a cure, I will, of course, need to keep thinking about this disease at least every few hours for the rest of my life (Silent Scream…)

Epiphany Part II: I refuse to feel sorry for myself. But a little venting now and then is a healthy thing, I think.

Volcano_2 So here’s my Top Five List of What Sucks about Diabetes At the Moment:

1) My strategy of doing “just enough” to maintain good control without going crazy has backfired (as in NOT keeping me where I want to be). “Just enough” is apparently not enough with diabetes.

2) My dosing-for-chocolate strategy is also failing. While I used to hit the mark pretty well, I’m now finding that I’m either sky-high at bedtime and over-correcting, leading to mid-night lows; or I check in OK at bedtime but go sky-high overnight as the chocolate hits its delayed peak. Either way, I lose. Sucks! … especially since there’s no long-term separating me and chocolate. *sigh*

3) Glucose checks at 2am. My endo insisted on this, to discover what’s really going on overnight and hopefully nudge down my A1c. But as a Mommy x3, sleep is more precious than chocolate, you understand. So I’ve compromised on checking whenever I happen to wake up in the night to pee — which happens every night, but at varied hours. Of course it remains to be seen if this new version of “just enough” actually gets me anywhere.

4) Continuous monitor lust. They’re starting to hit the market en force, but still aren’t quite affordable or practical. MiniMed’s Guardian RT is tre pricey ($2,700 + up to $5,000/yr for the sensors). DexCom STS is considerably less so ($800 for the Starter Kit + up to $4,000/yr. for sensors), but still a sizeable investment and not covered by any insurance. And now MiniMed’s new first-ever combo pump/continuous monitor system (Paradigm REAL-Time) looks pretty darn exciting, but still runs high ($1,000 on top of pump price, plus ?? sensor costs), and is still not covered by insurance. In short, waiting IMPATIENTLY for new technology to come to my aid here. Old story, new (im)patient.

5) And last, Not Least: Health Insurance FEARS. The proposed s1955 bill under debate, aka the “Health Insurance Marketplace Modernization and Affordability Act” is a SHAM that could wipe out vital health care coverage for EVERYONE WHO REALLY NEEDS IT (people with any chronic or ongoing condition that requires continuous care). The bill seeks to save the government some money short-term, but foolishly ignores the long-term soaring costs it will create by denying people the immediate “maintenance” care they need to avoid the astronomically expensive consequences of their conditions. Got that?!

Translation: in the words of California Insurance Commissioner John Garamendi, “it will do nothing to control healthcare costs. Instead it will simply shift them to older and sicker individuals.” I personally would prefer not to wait that long to get what I need for my diabetes! … I haven’t posted enough about this and yet am silently stressing over it. Horrible strategy. Please click below for a very fast and easy way to protest.

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Anyway, that’s my Top 5 for now. I could soooo go on, but anything more seems oppressive, and crosses the line established in Epiphany Part II. Stay tuned for next month’s installment.

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16 Responses

  1. Jim
    Jim April 25, 2006 at 10:18 am | | Reply

    Hi Amy,

    Maybe regular instead of novalog / humalog for the chocolate? Same thing happens to me. I too feel I am always thinking about the big D. It’s been 22 years for me now. I am kind of a “newbie” diabetic in that now I am at least dealing with it in a productive manner thesedays (the last 5 months). I wasn’t before. I was a “lazy diabetic”! Now I can feel good that I am doing what I should and my a1c is down significantly. I think there is a happy medium between living one’s life and being either too lax or too obsessed with the big D. I’m still trying to find it! Your #3 resolution is the same as mine – I test if I wake up. BTW – Happy Birthday!

  2. Rob
    Rob April 25, 2006 at 10:22 am | | Reply

    Good lord, you nailed it. Nothing self-indulgent about your list, either. Well said.

  3. Kelly
    Kelly April 25, 2006 at 12:17 pm | | Reply

    Hi Amy!,

    Are there any good books out yet for celiac diabetics?
    Thx!

  4. Scott K. Johnson
    Scott K. Johnson April 25, 2006 at 12:54 pm | | Reply

    I feel you on this one Amy! I seem to go in cycles for some reason. Times where I’m Ok with it, and able to deal – then others where I’m continually frusttrated and tired of dealing. We never get a break. Arg.

  5. melissa
    melissa April 25, 2006 at 1:05 pm | | Reply

    Love your list, Amy. It has taken 20 odd years to figure out that just enough is never enough with diabetes, kudos to you for figuring it out sooner. I miss the days when my parents could do the middle of the night checks for me and when I didn’t crave chocolate the way I do now…

  6. Eric Jensen
    Eric Jensen April 25, 2006 at 1:07 pm | | Reply

    Hi Amy,

    I’m right there with you on all of these – thanks for putting them out there. I definitely have continuous monitor lust, and yet worry that they’re not quite there yet. I’m considering getting a Dexcom but maybe not wearing it every day (so less $$$ for sensors). I feel like getting *some* trend info could be hugely valuable in learning to deal with different foods (e.g. “dosing for chocolate!). Also wondering about whether it’s finally time to consider a pump – not too keen on wearing it all the time, but perhaps it would allow more flexible dosing, again to cover a more flexible life.

    Over all, I’ve been enjoying all your posts – just found your site recently. I’m 41 and Type 1, with two kids, so I identify with many of your posts.

    Happy 40th!

    Keep up the good work,

    Eric

  7. type1dad
    type1dad April 25, 2006 at 5:09 pm | | Reply

    I just commented about S.1955 on my blog also. Glad to see you put the link there. Your html is muh better than mine. I can only home that the advocates out there storm the Senate!

    Be Well,
    Jeff

  8. c-mo
    c-mo April 25, 2006 at 5:36 pm | | Reply

    Check out this op-ed on health care chaos …

    http://northridgebuzz.blogspot.com/2006/04/health-care-chaos-is-it-trend-we-want.html

  9. Tiffany
    Tiffany April 26, 2006 at 10:46 am | | Reply

    Great list, Amy.

    1) You’re in great shape if you’ve learned this early on. I did the whole deny and/or rebel as a teenager for a few years before realizing that just ’cause I pretend like it’s not there by doing the bare minimum to keep it at bay, doesn’t mean it’s going to lie down quietly.

    2) I have a great CDE who taught me some killer MDI tricks – pre-pumping days – that helped to mimic pump action. The one I found most helpful was the high fat injection. What you need to do is split the injection to try to match the fat content/absorption of what you are eating. For example, calculate the complete bolus for the carbs you’re consuming. Then take only 75% of the bolus right before eating. In two hours, take the remaining 25% injection. Keep in mind that these are just starting points; eventually you can fine tune the exact dosage per grams of fat and the time in which you should take the remaining injection. The trick is to start somewhere and then test, test, test.

    3) Yep. That’s all I’ve got to say ;)

    4) I’m getting the Paradigm Real Time System in about two weeks. I cannot wait. I’m about to gush all over here…so moving on…

    5) Sucks. Seriously. I am so glad to be a Canadian right now…

    1. Penelope
      Penelope December 1, 2011 at 10:44 pm | | Reply

      Have you gone on the sensor? I’m about ready to.

      I go low in the night.

  10. Nick
    Nick April 26, 2006 at 12:47 pm | | Reply

    By incorporating Bernstein’s therapy into my life, I’ve reduced my average blood sugar to the nondiabetic range and have relegated glycemic control to a minor aspect of life. Also, I eat chocolate every day. Sometimes twice a day.

  11. ConfusedByNick
    ConfusedByNick April 27, 2006 at 3:21 pm | | Reply

    Nick, How do you eat chocolate every day, or twice a day, if you are incorporating Bernstein’s therapy? You’re lieing about one or the other. :-)

  12. AmyT
    AmyT April 27, 2006 at 3:56 pm | | Reply

    Um, I was kinda wondering about that, too, Nick…

    Maybe I wouldn’t mind the Bernstein diet so much if I could each chocolate twice a day!

  13. Kim
    Kim May 3, 2006 at 7:38 pm | | Reply

    Amy, thanks for the link to the ADA letters. I sent them to both Boxer and Feinstein – and with just a click!

    This law is so off-the-wall I can’t believe it is even being considered.

  14. medicow
    medicow May 7, 2006 at 8:30 pm | | Reply

    Hi , that was indeed a great blog.After all so much has been written about diabetes, its consequences if we dont take care of it, there is nothing much to write anyways.I have nothing to do with diabetes but I just stopped by to tell you guys to please check out my health based search engine http://www.medicow.com/topics/Diabetes

  15. Emily Capaldi
    Emily Capaldi July 29, 2007 at 12:14 pm | | Reply

    I am just so sick of being diabetic i feel like just ‘forgeting’ about taking my insulin i mean who cares if i die not me anyway! It’s basicaly when my mum turns round to me in the really rough times and says ‘Emily i am so proud of you and what youve done what youve been through your so brave’ and thats what keeps me going so if you ever get to read this this mum thanks

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