Stay on Target

Yesterday I had my appointment with Not House. All is well in Casa de Chris. A1c is 6.5. All other medical-sounding values are where they should be. As far as any official statement on A1c goes, I’m right on target. Had I written this immediately after my appointment I might have a more chipper tone, but despite this success I’m still a bit perplexed.

Just a reminder, I’m not a medical professional and my words are not to be taken as any kind of sound, intelligent, or reasonable medical advise. I’m just thinking out loud in this one. This is more of a trip into the Mind of Chris….You’ve been warned.

Don’t get me wrong, 6.5 is fantastic. I’ve been working my butt off for this. Obviously a great deal of credit for this one goes to Hal Jordan. I knew that my control had improved after adding the Dexcom to my arsenal. Highs were treated sooner and more aggressively. I’ve had fewer overcorrecting-low incidents, although there are still too many for my liking. And each day I’m getting better at having a sexy, straight line for 3-6 hour intervals on my receiver’s display. This thing works, I’m living proof. Joining the revolution was one of the best things I could have done for my health. Luckily I had you all, my eager-readers, specifically the Diabetes Online Community to get my back.

But that’s the problem. The DOC was my initial exposure to this technology. I know the Internet is much faster and more accessible than my doctor, but I doubt he would have ever suggested this or any other method to improve my control if I hadn’t said anything. I know that I have to be active and engaging when it comes to my own health care, and I value each and every one of your input when I need it, but you all should not replace my endo or a CDE or any other kind of training. And right now that’s what it feels like. I wonder why I pay a guy to say “keep up the good work” when he has had so little input and impact on my health. Right, appointments are (supposed to be) every three months and if necessary I could always call, but I don’t want to feel like I’m a burden just because I’m the one not satisfied with my control.

This is a tough mental state because I know I’m doing a great job, even with my somewhat analog technology. Daily shots and a Dexcom got me to 6.5%, sweet. But what about all the bumps along the path to getting here? Who was it that suggested switching the timing of my Lantus? Who was it that suggested splitting the Lantus, and to that point, who worked with me to figure out how much to take and when? I’m not trying to dismiss the value of an endocrinologist, but I didn’t expect things roles to feel so out of place. There’s no right way to say this, but it feels like the more hands-on and go-get-em I have become, the less I seem to need a medical professional.

I know that’s not how it really is and I should appreciate that things are going well right now. With something like Diabetes, the only thing I can be certain about is the uncertainty of this disease. No matter how hard I try, no matter how hard I focus on doing what I need to do to be healthy, there’s always the risk of something coming around and screwing life up. I’m doing what I can do minimize that potential and with that I have some decisions to make.

I don’t know what to do about Not House. I have done a lot of this on my own, and as it stands, with my analog scheme of MDI, there isn’t too much tweaking that an Endo could really do. A lot of this is more or less “guess and check”. Does 10 units of Lantus work during the day? No? Try 11 (or 9 depending on the need). Even if splitting the dose was his recommendation, I would still have a lot of work to do on my own. I can’t necessarily blame him for the amount of effort that I’m putting in to this because this is MY Diabetes, not his.

The worst part is that I’m not exactly sure what it is I want out of my Endocrinologist. I’m almost 26, I don’t need a firm pat on the back when I get things right. I’ve shown that I am capable of fairly awesome control without too much external motivation. Surely that’s the kind of patient a doctor would love to have, right? At this point I know I’m rambling so I should probably wrap this up. I’ll figure out what I need to do and execute my plan when the time is right. Maybe that time will be tomorrow, maybe in a month, maybe a year. One thing I do know – it could be worse. Anywho.

6.5%. MDI. Dexcom. I am Spartacus.

8 thoughts on “Stay on Target

  1. I totally get it. I fired my old specialist for basically giving me the run around when my diabetes was doing just fine just because I guess they could? I know it’s slightly different with pregnancy, but yeah, all the extra appointments (and copays!) just to hear “Good Job!” and be sent on your way and not really be engaged by anyone and always having to be the one to make suggestions and changes and do what’s best for you despite what the professionals may think … it sucks.

    But it’s also kind of the awesome thing about being a grown up now. You can speak up for yourself and your care, and let people know what’s acceptable and what isn’t. It’s very liberating. 🙂

    You’ll figure it out. In the meantime, way to go on your 6.5! 🙂

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  2. Congrats on the 6.5%! I don’t think there’s anything abnormal about what you’re feeling. It’s difficult to think that someone else could have any grasp of what PWDs go through every day (or would want to)!

    That said, it couldn’t hurt to talk to other endos in your area and see if you click with any of them more than you do with Not House. Part of being in charge of your treatment is to find people, including doctors, that align with who you are. If you find an endo who jives with you more than Not House does, go with it!

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  3. Interesting! I think the key is finding the right balance of doing stuff on your own and consulting an endo or CDE. If I had to call my CDE every time I tweaked a basal (by just a little, of course), we’d probably hate each other.

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  4. Congrats!

    I tend to agree with much of what you are saying. Thank goodness for the DOC. Working through things more independently, with the help of you and others, suits my style. I have never placed much reliance on medical professionals. That’s because of me and my personality, not them.

    But I’ve heard so many great stories of people working with their or their children’s endos getting great support. The support that they need at the level they need it. Take George, for example. He just changed doctors and is thrilled with how much attention and guidance he now receives. Do you think a change in your endo/CDE might get you what you’re looking for even if you aren’t quite sure what it is?

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  5. I totally get it. The last time I went to the endo, the dude did not even touch me, no foot check, no heart listening, no nothing, cause my A1C was where it should be and he knows I test a ton and when I was on Lantus, one of the first, I am the one that told him that it did not last 24 hours for me and that I split the dosage, and he said oooo, I will have to tell others, so I try and try to fire him, but then the pump supplies come into play and my internist won’t do the pump, she says she does not feel comfortable, but my internist is who I want to see as she is so intelligent about any issue I have ever had, and then when I go see the endo I fail to fulfill my visit to the internist, just too much doctoring, but I am not getting good doctoring at the endo, ahhhh!!!!! I got the endo down from every 3 months to every 5 months, but I really don’t need him, so yes I get it. (guess I just could of said that.)

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  6. Way to go on 6.5!

    RE: Not-House. Let me start by laying the blame on the Medicare/medical-insurance canard cartel. Granted, that’s not where all the blame lies, all the time, but I want to take the heat off “bedside manner” for the course of this argument.

    The Medicare/medical-insurance cartel (MMIC) sets expectations of the average duration of an office visit, and also sets the rates at which physicians are reimbursed for their time and expertise. If any individual doctor wants to remain on the “in-plan” list for reimbursement-via-MMIC, he must adhere to those (sub-)standards. In short, the doctor must spend an average of no more than fifteen minutes on a patient for any given appointment — and that includes the prep work (reading the record and case history) and the paperwork (updating the medical record and preparing the billing information for MMIC). Said doctor is also required to put in a full-day’s work (same as us paid-by-the-hour peons) — more if he is in an area with a shortage in his specialty, or if an emergency pops up during the day.

    This leaves the doctor precious little time to keep up on the state of the art in his chosen specialty — often, he has little more time than that needed to earn the required CMEUs (Continuing Medical Education credits) to retain his license.

    In addition, many specialists see patients with a wide range of medical issues in that given specialty. The endo caring for your Type 1 diabetes may also be caring for my Type 2, Rachel’s thyroid issues, the neighbor-up-the-block’s child’s giantism, someone else’s Addison’s Disease, and so on. To further compound the matter, YDMV. What spikes one of us with D may not spike the next person. Sometimes — especially where Type 2 diabetes is concerned — this may be because of different underlying causes and different responses to the same therapies. Even if your endo specializes in diabetes, s/he may not specialize in your type of diabetes — much less your individual case and circumstances.

    This leads us to the point where the people living with a given medical condition, and the people researching that condition, are the experts. We self-quantify (see The Journal of Participatory Medicine), read and evaluate each other’s questions and observations, and — if we can manage the time — read through the technical literature to find out what works, what has been said to work, what the risks are, and how-and-whether they apply to us as individuals.

    Often, today, where the doctor comes in is at the point of helping us self-quantify (e.g., your 6.5 A1C), analyze the data we have collected, and collaborate with us in evaluating the information we have received (technical, legal, marketplace, and anecdotal) and determining if-and-how it applies to us as individuals. This, they are often able to do in their “fifteen minutes of fame (per calendar quarter)”. And, only they are allowed to prescribe the medications we require to stay alive with our particular medical conditions — but they can only prescribe according to the MMIC criteria. (This, I’m sure, frustrates as many doctors and pharmacists as it frustrates us.)

    If most of us had to rely on doctors and CDEs for all of our diabetes information, we’d probably be like the stereotypical Uncle Hoosits who’s half blind, missing two fingers and a leg due to complications of diabetes, but who has never heard of home glucose monitoring — much less carb counting, sliding scales, and basal/bolus therapy.

    On the other hand, doctors and CDEs need patients like us to alert them to what’s up-and-coming on the diabetes-care scene — including, if we can parse it out in advance for them, the good, the bad, and the unadulterated snakeoil.

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  7. You ARE Spartacus! 6.5 on MDI is phenomonal! My CDE told me the best I would be able to do on MDI would be 7. Take that, haters!

    No seriously, Chris. You ARE awesome. I had the same experience with CGMS and my endo (although I LOVE her and wouldn’t trade her for the world). In fact, I just had this conversation with several people here at Roche today – “I never even knew what a CGMS was until I discovered the DOC!”

    Personally my relationship with my endo has become way more emotional than it probably should be. I am so glad I have a woman because she understands where I am coming from emotionally when a man may not understand that. I am so glad you are on Dexcom, and you’ll figure out what you want out of your endo, even if it’s just changing your visits to once a year to run tests and get scripts. And when in doubt, consult the DOC.

    P.S. we REALLY missed you here in Orlando. Dayle and I even had a conversation about you. OK so it was like a sentence but still. You were missed! But if I haven’t told you yet, I would be ecstatic if I had landed a job with the ADA so you keep doing whatever you’re doing because it seems to be working.

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  8. Congratulations on your A1c! I totally get where you are coming from – I have felt that way a long time. I have only looked at a doctor as someone to write the script for a long time. Anytime I had a problem it was more like you must be doing something you should not be doing instead of what usually works just doesn’t work for you. I too am very grateful for the DOC because I wouldn’t know what I know today or have my Dex either.

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