Thursday, September 15, 2011

So when does it get easier??

For years and years I struggled with my A1C.  It was always too high.  No matter what I did, no matter what my endo and I tried, no matter what I couldn’t get it where I wanted it to be.

So, before I go any further, let me clarify that I am not saying an insulin pump is the answer for everyone, nor do I believe everyone should pump.  We are all different.  What works for one doesn’t work for everyone.  Let me also say I am not trying to brag about my A1C at all.  Okay, but, for me the pump has been kind of magic.  Since going on the pump about three and a half year ago, my A1C has been right where my endo and I have wanted it to be.  Sound the bells, strike up the band, everything is great, right?

report_cardWell, not quite.  I think back to when I was working so hard and not getting any results.  I think about how much I dreaded each endo appointment.  I remember wishing I could just get my A1C in line because then all of the stress and fear would be gone!!!

And I did.  My A1C has been in line since August of 2008.  Each and every lab slip comes back with nothing but the numbers we've been shooting for.  But guess what?  The stress and fear, the dread before each endo appointment?  They are just as strong.  What . . . the . . . . fructose??

I see my endo on Wednesday.  I procrastinated getting my blood drawn at the lab until today.  I secretly toy with the idea of coming up with some excuse to push back my appointment.  I’ve had several dreams about being in that tiny exam room and finding out that my A1C is HORRID.  I am convinced I am doing terribly - even though when I download and analyze my numbers they are right where they should be.  It's not just the average that is good (because to paraphrase my friend Rachel Y, a 210 and a 30 on the meter work out to a perfectly acceptable 120 average.)  The numbers, the pie charts, the standard deviation- they all check out just fine.  And yes, I pour over the numbers from both my CGM and my meter, never really believing that either of them are telling the true story.

All of those years I spent wishing I could get my A1C where I needed it to be, sure that once I did I could stop worrying neurotically over each number and appointment, seem kind of like a waste.   Because I’m finally there . . . . yet I am still just as neurotic.  Why can’t I relax?  Why can’t I trust that I’m dong well?  Why am I sure I’m gong to get blindsided by a sky-high A1C, even when everything points to that not happening?  Why am I so afraid of letting myself, and my endo, down?  Why did I think that once I got my A1C to a certain number all of my diabetes problems would be solved?  And when, oh goodness when, does it get easier?

17 comments:

  1. Karen, I still worry about going to my endo and seeing a 'bad' A1C number. Last time it was 7.1% and I was shocked. I'm not sure the concern ever goes away.

    Logically I know it's a number, it's context, it's informative not a personal judgement. But in my heart the A1C doesn't feel like that. Still working at this after 39 years. I think we may need a cheerleading section of the DOC that gives us all a big high five no matter what the number is.

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  2. I don't think it will ever get easier. Even when you know you did fairly good, you remember the days that it wasn't so good and you have this fear that those bad days will sabotage the whole 3 months.

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  3. You have anxiety about your health. Who can blame you? All that time looking at your numbers, fretting if they are right or not. Self testing, self-scanning. You are afraid of the results, and you find it hard to believe that you are alright - because for so long - you have fought.
    I know it may sound far fetched, but check out a book called "Hope and Help for Your Nerves" by Claire Weekes. It will help you out a LOT in this respect.

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  4. oh Karen dear you are NOT alone. Promise you that. No matter how hard we try, no matter how much work we do, we still don't get a number we'd like. Regardless of my A1C's being pretty low right now, (I PROMISE YOU ALL, because of being pregnant, I'm a HUGE insulin pusher to myself, and would rather battle 60's to 90's all day long than ever see 160's which i still due. But I'm pretty much NEVER satisfied anymore) Because of that insulin-pushing self, i've been able to manage it, at least on paper. I'm still not happy with it. I am nervous about after baby is born, because I feel like she has helped keep numbers lower by sucking the sugar out.

    Sorry for the long post. Keep up all the hard work Karen, we all still get that feeling when we wait for our results, and I too wait until the last minute or put it off just to think one more day could make a difference.. lol

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  5. While I was reading this, I couldn't help but think of my own kids and I had to wonder. One, I wonder if the kids will stress for the rest of their life and two, what if they don't? I think I am more worried about them not caring. I know it's stressful, but the mere fact that you worry means you pay attention. There has to be some kind of silver lining in that.

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  6. gosh, i sure don't know when it gets easier, because we're still pretty new to it all, relatively speaking. all i can say is, you are NOT alone, because i definitely have the same anxiety you've described here. hang in there!

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  7. Ummm...I read your blog because I want you to tell me it gets easier!!

    You know what? Diabetes sucks. But I think as long as you keep trying, that's what matters. That's how it gets better. You don't give up. Just try to get more numbers right.

    Chin up!

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  8. O h Karen

    Hang in there honey. I dont know how you do this with a chronic illness that is so darn challenging. Good luck at the docs office
    love to KC

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  9. I am 44 years old and have had Diabetes for 38 years and an insulin pump for over 10 years and everyday is still a challenge--I have a great A1c (6.3-yeah)but it does not magically happen--it is because I am "doing numbers" (carbs-bolus-basal-bs) 24 hours a day---it is sooooooo draining! I have always had a pretty positive attitude about the disease but as the years pass, I notice a sense of frustration that is growing :(

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  10. "D" really never gives us a break does it? Not from shots, testing, carb-counting, or worry. It's just always there. You said it beautifully Karen. Very best of luck at your Endo appt.

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  11. I've never really dreaded going to the endo, although I am always a bit trepidatious about what that NUMBER will be.

    Funnily enough, my A1c has been a smidge higher than when I was on MDI. I was SO strict while doing injections. My first A1c after going on the pump was the same as the previous MDI one, but since it has creeped up. I'm still doing really well, no higher than a 6.3%, but it's funny to me that my control is not quite as good on the pump. It just helps me to eat more normally and thus feel more normal.

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  12. Yep...same-same...I hear you....I get it. I always start to panic the week before the Endo appt. It never fails that Joe's BGs start to hit a shit storm the week prior to endo. I start to fret over explaining them, etc.

    We just had our Endo appt Tuesday...clean slate! AND. Another 3 months or so 'til we have to fret again!

    Good luck. xo

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  13. Oh I feel the same and I don't even have diabetes! The feelings that surround Grace's A1C result feel like a grade on me as a parent. Can you believe I was actually pissed off, yes, pissed off, when her A1C came back a 7.1 last time? I was so used to 6.4 and 6.6, that I got really upset. Grace's endo looked at me like I was CRAZY. Grace had grown almost 5 inches in one year and shot up and growth hormones and everything and here I was not seeing that I rocked a 7.1 the last 3 months, and before that, the lower 6's.

    It still feels like a grade to me, no matter what anyone says. It's such a loaded number. I feel and hear what you are saying Karen, and I hate to tell you, that I don't think it gets any easier. I would LOVE to talk with an 80 year old Type 1 person who has had the D for 40-50 years, about getting their A1C results and see if they STILL get nervous. Interesting.

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  14. If it was easy, life would be boring. Who wants a boring life?? Not me.

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  15. Oh man, I hear ya about high A1c's and the anxiety at the endo's . Cara's (my daughter and T1)has been sitting in the 10's for a year now know matter what we do. SOOOO Frustrating!! We just started pumping and I hope this will help.

    I sometimes send Cara with my husband to her appointment because of the anxiety.

    It seems that A1C's are getting to a lot of people lately, I have been reading a lot of post about how much they SUCK!!

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  16. I am an endo struggling to keep people from being so upset before their appointments. I chose this field because I love working with people and helping them overcome challenges. Diabetes is like an extra job with no pay and the fear of complications. You can control your behavior but you cannot control the numbers. I try to help people improve their numbers in order to lower the risk of complication. Any suggestions on how to relive the previsit anxiety.
    Sybil

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  17. "We are all different. What works for one doesn’t work for everyone."

    That is so true. The world would be a nicer place if more people would recognize that, instead if trying to get everybody to conform to their opinions, whether those opinions are about health, politics, religion, or whatever.

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