Failure is not an option

failureI had a rough Endo appointment this week… it wasn’t that I got “bad” news or anything.. but I found myself really beating myself up afterwards, almost to the point of tears. Why do we do that??

Basically I don’t have a “team” behind me of doctors and CDE’s, etc, like some people do. And it’s my own fault. I’ve blogged about this before, but in a nutshell I’ve gone to my Endo for about 12 yrs now.. because he’s convenient. He’s very low mainteanance, I see him every 3 months, he gives me my Rx’s, and we move on. He’s a very nice person but is not JUST a diabetes dr (he’s a true Endo, so he deals with other issues as well). Honestly, I’ve probably stayed as long as I have because I like his staff so much.

As most of you reading this probably know, I am 26 weeks pregnant with twin boys. This is my 2nd pregnancy, and this one is pretty much exactly like the first one (but a lot more uncomfortable .. lol) in that my insulin needs have increased pretty drastically as I arrived in the later part of the 2nd trimester. I’ve been adjusting my basal rates on my own (I did visit a new Endo/CDE last year and she told me I’m “the CEO of this operation”) and I keep records of when I make the adjustments, and how much they changed from/to. I’ve had to adjust them three times in the last 5-6 weeks.

Earlier this week, I had a bad site which caused some unexplained high’s for a couple of days, so my logbook that I brought in didn’t reflect true numbers (in my opinion.)

I gave the dr my logbook, explained my basal changes, gave him the notes on those as well (note that I do not normally come in this prepared.)

After we went through his script of questions –
“What’s new with you?” (Uh, I’m further along in my pregnancy than I was last month when you saw me?)
“How often do you get up in the middle of the night to go to the bathroom?” (Well, I’m pregnant with two growing boys, so I actually go to the bathroom quite a bit, but unrelated to my diabetes.)
“What are your current basal rates?” (Can’t you look in my chart?)
“What is your current carb ratio?” (Again .. see above.)

Then he looked at my logbook and said, “The last few days have had some pretty bad high’s – that’s not acceptable.” So I then explained to him about the bad site. He asked when I changed sites (even though it was written in the book).. I told him “yesterday” and that I’d also increased my basal rates yesterday, and since then, they’ve been pretty much perfect.

He also said we should increase my carb ratio. I was at 1:5 (which from what I see from other folks, that’s already pretty high, but YDMV) and we changed it to 1:3. It actually seems to be doing the trick so far. Then he said “And we should up your basals, because you obviously need more insulin.” Then I reminded him of what I’d told him 5 min earlier about just having increased my basal rates the day before, so let’s give it a chance to work.

He also only checks my A1C using the A1C Now meter in his office. Unbeknownst to me until last time I recently blogged about this topic, that is not a very accurate number. And I also had no idea until my appt last month, that when he does a blood draw, he does not include an A1C to get a true number. *sigh*

But at my appointment last month, that A1C meter showed 6.2. This week’s appointment showed 7.3. Yikes. That was a 1.1 jump in just 30(ish) days. Granted, the number itself is likely not accurate, but the increase probably is accurate. I’m still in an okay range, and I know that …. but going back to being the CEO “of this operation”… if a true corporate CEO saw reports come in that showed a decrease in profits of that significant of an amount, wouldn’t he/she beat him/herself up about it?

So that’s what I did. I got in my car and I teared up. I kept thinking I need to do better, it’s not only MY life depending on it, but these two precious ones I’m growing inside me – even though I truly feel like I AM doing as best I can – there are always places to improve. One of the first things that popped in my head was carb counting. I am really bad about SWAG’ing it and not very accurately .. so that is definitely an area I can improve upon.

The thing that stood out most to me after my appt was when I tweeted “I hate leaving the Endo’s office feeling like a failure.” I immediately received a call from my husband to ask me what had happened, and he (more than once that day) encouraged me that he’s amazed by how well I do in managing my diabetes. I also got a very nice and encouraging text from my friend, Suzanne. And then I started receiving encouraging tweets from my friends in the DOC (shout out to Jess and everyone else that replied – you all ROCK!) I was not at all looking for that when I sent the tweet.. I was just venting. But I can’t even express how much it meant to me to hear from these friends that live with this disease like I do every single day, 24/7, telling me that I’m NOT a failure. I know deep down that I’m not .. but I sure felt like one when I left his office.

I vowed to do even better. And I guess it worked. My next few BG readings were as follows –

95, 142, 118, 127, 129, and 106.

For some people those numbers might be normal and no big deal. But for me, I’ve been hovering in the 150-200’s … so I was pretty darn proud to see them. And not just one good one scattered here and there. 😉

I do feel much better, and I know that I am NOT a failure. 🙂 I’m just someone trying to figure out a disease that does not play by any sort of rules, and changes every single day.

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About Shannon

I am a wife, a mommy, and a Type 1 diabetic (since '92.) I have had two successful pregnancies - one of which was with twins. I wear an insulin pump- - off and on for 17 years; currently on the Medtronic pump and CGM. I am not a medical professional, nor am I giving medical advice. I am just sharing my day to day stories of someone who lives with this disease every day. My ultimate goal is to raise awareness.
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16 Responses to Failure is not an option

  1. Patti Burke says:

    Shannon – Do live in Cleveland? I have an awesome Endo if you are looking for one! Also, you are doing great!! I can’t imagine dealing with diabetes and being pregnant! YOU rock!

    Patti

  2. Scott E says:

    Shannon, here’s my take on the whole thing. Your endo shouldn’t be saying “that’s not acceptable”. That alone is, well, not acceptable. Neither is his having to thumb through a logbook or your meter history, or ask you to read off your rates and ratios.

    The thing is, I went through the same thing with my previous endo – only instead of asking about my nighttime bathroom habits, he persistently asked “Are you still working for…”(no, I left that job two years ago,remember?) and “Are you still playing hockey…” (no, I haven’t played since XYZ, remember?). It was like deja vu every time I saw him.

    But he was a nice guy and the staff was nice.

    When I moved to a different state, I was forced to change endos, and WHAT A DIFFERENCE! They took my pump for a few minutes and downloaded all my settings, BG tests (my meter automatically sends it to the pump, whether I do anything with it or not), boluses, carb counts, bolus “overrides” and so on. Instead of spending valuable time recording this data, he spent it ANALYZING it!

    And before I left, I was handed a post-dated lab slip with the directions to get the blood drawn a week before my next appointment; that way my latest A1C (and other results) would be there when I got there. I was completely blown away, that in about 30 years no one had ever thought to have the blood drawn AHEAD OF TIME! I was also given a paper with some of the recommended improvements we discussed (usually involving square/dual-wave bolus, temp basals, or rate tweaks). Not ordered; recommended.

    I hate to tell you this, but I think it might be time to cheat on your endo and secretly see someone else. From your involvement in the DOC I know that you’re looking for improvement, not simply maintenance. Have you ever asked your endo a question, and were you satisfied with the response? If not, I think your goals are not aligned.

    Now, I don’t know a thing about being pregnant with diabetes – other than that it’s REALLY hard and you’ve got keep a closer eye on everything. I know you’re doing the best you can, and it sounds like you want to push yourself to do even better than that. That’s ambition, not failure. You are not a failure.

    I really hope you can switch to an endo who can ENcourage you, not DIScourage you, to go from “good” to “great”. If you don’t know how to find one, I can help…

    I know — I talk too much sometimes.

    • Shannon says:

      You don’t talk too much, Scott – that was all very helpful! (As you always are!) And you are right. My dr does none of that. He also has only checked my feet once. In 12 yrs. He asks the same scripted questions each time. And not sure if you remember this post, but when I had my son 5 yrs ago, my Endo never showed up to the hospital to check on me, even after I’d told him 3 different times what my induction date was, until my OB called and basically cussed him out. Then he showed up and wanted to put me on a “diabetic diet” in the hospital…. not exactly what I needed so I told him no. He said ok and never offered anything of value. 😦 You’d think I’d have learned and had THAT be the final nail/straw… but here I am, 5 yrs later. At least I’ve recognized the problem.. now to just do something about it! I just hate to switch this far into my pregnancy …. but I’ll start asking around for local recommendations. I went to a clinic last year and liked the dr but hated the “clinic” part of it. One of the best things I like now is the one on one I get with his staff when I call. With the clinic, I called an 800 number and may or may not get a live person to answer my questions. But I know there has to be a better option ….

  3. I have appointments like that too. We really do try to do all the right things and when things don’t turn out like they should, it gets really frustrating. I’ve been following your blog for a couple months and I can tell you do the right things for control. Maybe it is time for a new doctor. I’m sure there are a ton of great Endo’s in the Dallas area.

  4. Katie says:

    Hi Shannon, I 100% agree with Scott. You ned to find an endo who is keeping up with the technology you are using, who will download the data and analyze it with you and who draws all labs beforehand (if that’s what you prefer). I finally made the switch 2 years ago and it has made a WORLD OF DIFFERENCE.

    Also, IMO, asking someone how often they go to the bathroom and then using that as an indication of diabetes control is about as accurate as having them smell your breath!

    • Shannon says:

      Haha!! That made me laugh, Katie. You mean it doesn’t matter if I have fruity breath? 😉 And the whole asking someone how often they go to the bathroom… to me, that just seems so antiquated – there are SO many more pertinent questions to ask. Especially when you’re talking to a pregnant patient! lol That’s been his same script for the 12 yrs I’ve been his patient.

  5. Shannon, I want to let you know that there are times when I read your blog that I tear up, and I am not really an emotional person. this latest blog really got to me, because I know you and I know how hard you work at taking care of your self. I really liked Scotts’ response and hope you find another Endo who will treat you well and will listen to you and ask you pertinent questions. You deserve better than what you are getting.

  6. Karen says:

    You are AMAZING. Your children are blessed to have you as their mother. I don’t have diabetes, my daughter does…but being a mother, I could feel your frustration and cried with you reading this. EVERY DAY is a challenge and, like you said, ever-changing even without a twin pregnancy along for the ride. You’re doing a great job. You need a new endo:(.

  7. Kim says:

    I think the reasons that you’ve stuck with your endo are some of the same reasons I’ve stuck with an internist… it’s easier, it’s less hassle for me, and it feels comfortable. Now that I’m seeing a real endo during pregnancy, I’m noticing all of the things she does that my internist does not… and thinking that maybe this switch in doctors needs to be a permanent thing, no matter how resistant I am to the idea. Health first, you know?

    P.S. You are doing GREAT, despite what numbers may tell you. Keep working hard, momma. 🙂

    • Shannon says:

      Thanks for the encouragement, Kim. I kick myself every time I think about how I’ve wasted 12 yrs that I could have been seeing a rock start Endo. But like you said .. convenience won out. I got the name of a referral from someone local in the DOC and I will give that dr a call just to check her out. She was really good with her pregnancy, too. And actually visited her in the hospital (something mine didn’t do till my OB called on day 3 and cussed him out.)

      You’re doing a GREAT job, too, momma. 🙂 Can’t wait to meet all our new bebes.

  8. Pingback: Pregnancy Tips | No More Shots for Shannon

  9. So, shame on me for being SO late in reading this. In fact, I’ve even seen you, in person, and didn’t give you an extra “feel better” hug. We’d better schedule another meet up…

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