My Doctor Has The Flu -- Self-Management

My new doctor was struck with a bad case of the flu just when I started working with him on adjusting my insulin protocol. I don’t expect to be able to communicate with him for seven to ten days.

Yes, there are other doctors at my HMO that I can contact if needed. I’ll be fine.

But his illness just brought home to me – again – that ultimately, I am responsible for the day-to-day management of my diabetes. In an ideal world, I would have a team of people helping me. A diabetes specialist, a CDE, a diabetes-savvy nutritionist, a podiatrist, an ophthalmologist, a concerned spouse and family who want to be informed and helpful, etc. I do have some of these helpers, some of the time, but leading this team for the rest of my life is…me.

I’m the one putting myself to bed and getting myself up. I’m the one feeding myself, or not. I’m the one exercising, or not. I’m the one wielding the glucose meter, or not. I’m the one giving myself the insulin injections, or not. It’s my heart, my feet, my eyes, my kidneys, etc. that are at risk.

Being passive will get me nothing but trouble. Neglecting my self-care will be a disaster. I have to run this show 24 hours per day, seven days per week, for the rest of my life. No breaks. No holidays.

Despite the paternalism inherent in our medical system, this whole “follow the doctor’s orders” meme, I have to learn everything I can about my own diabetes and take charge of my own fate, not leave it in the hands of other people, however nice and well-meaning those other people might be.

I live alone. The people in my family are not supportive or at all interested in becoming informed about diabetes. They simply don’t want to hear about it.

I’m flying without a net every, single day and night.

In order to have the best life, the best outcome with diabetes, I have to be as well-informed as possible and be intelligently assertive about managing my own care, not wait around for someone else to manage it for me.

If I don’t do it, no one will.

You can do it. Despite lots of talk of a diabetes team, which conjures up a vision of a group of dedicated professionals conferring about what’s the best treatment plan, most don’t have a “team.” I don’t. I periodically see a podiatrist & retinologist, but they’re hardly a team. The CDE I saw never got in touch with my endo. I had to request she send my file to the endo, who referred me to her. The endo sent nothing to my PCP or visa versa. I’m my team. My husband is supportive. Other than in the most perfunctory way, my family doesn’t have any interest. My sister doesn’t care & never asks. My one attempt at explaining diabetes to her resulted in being told that taking shots was not a big deal & she didn’t want to hear anything negative.

Oh, Gerri, I think your sister and mine must be twins!

I wish we could get that magic, mythical, elusive “diabetes team” going, but it’s best to not be in denial about it, eh?

We diabetics need our own version of the “Army of One” tee-shirts! ;0)

Well, I know that I can’t be much use to you yet – other than a sounding board and source of the occasional cyber-hug – but you have been a great help to me. Thanks to you, I’m reading up a storm and slowly, carefully tweaking my own Lantus – telling my doctor via e-mail after the fact so I don’t get labeled “non-compliant”. LOL

I hope to be well-enough informed in the future to be able to “pay it forward”.

Army of One–exactly! Given the state of medical care, can you realistically imagine a coordinated team? I started a discussion to ask if people truly had a team because we keep hearing “consult with your team, contact your team for advice.” Who are these mythical team members? Diabetes is, of course, about self-management, but it would be helpful to shorten the learning curve with sound professional assistance. Alas, that’s not usually the case.

The most help I received was from my PCP, who mostly treats T2s. Took months to get an endo appt & my PCP had me call him every day for two weeks after I left the hospital. But, he’s a rare & special doctor. I’ve turned my diabetes care over to him because there are two endos in my area & both are useless & arrogant. My doc’s 12 year old son was recently diagnosed T1, so he’s keeping up with the latest. I’ve tweaked my doses from the beginning since there was no one to guide me. I learned about split doses of Lantus here. My thrid endo (traveled far to see him) denied Lantus caused lows. I also learned about Levemir here & fought tooth & nail with the endo to change to Levemir.

Chronic disease is always a lonely & solo journey. You’ve done an amazing job self-teaching & should be very proud of yourself!

My sister has a charmed life. She has no empathy for people whose lives are less perfect or far from perfect. I love her, but I’ve never felt the same after her wounding remarks that had me tears.

Cyber hugs are very much appreciated! Thank you.

I think that our “team members” are on this site. I have acted as my own advocate for many years regarding several conditions that I have in addition to Diabetes. I have even gotten a response of " That woman is calling again," when I needed to talk to a doctor with a question. I currently do not have an endo, I use my PCP to handle my D and my other conditions. He basically tells me to do my own tweaking when I need to.
I think you will do fine handling your D yourself !!! Remember, we are here to help when you need it.

Thanks, y’all. Yes, we are here for each other – thank goodness! Gotta love the tubes of the interwebs – what did we do before it?

Gerri – I yelped when I read your post. I had doctors tell me that I couldn’t get lows from Lantus, too! They used to have pretty widespread propaganda on that, I guess. When I had my bad low (36) last summer, Lantus was my ONLY med at the time (I started Novolog months later). An hour after I injected it I had to call 911 because I was going under and had no idea what to do. I was totally unprepared due to being mislead about Lantus.

My BS dropped over 100 points in an hour and all I was doing was sitting at my computer, reading my e-mail.

Where do these doctors get their information? Yeeks.

Now I know to inject the Lantus in my legs, not my abdomen, and to be prepared for hypos with Lantus because yes, they CAN happen.

Yesterday, my doctor told me “there’s nothing I can tell you that you aren’t doing” which made me think “damn, I knew I should have gone to medical school so I could bill myself $300 to talk to myself…”.

Lately, if I see an anomalous number, up or down a 20 points high or low for a couple of days in a row, I nudge my pump. I haven’t called a doctor/ CDE/ “team” since dx in 1984. Somehow, the “big changes”-- “I want a pump” “I want a CGM” came around the time of regular appointments so I just worked it into my schtick.

I would suggest that if your BG aren’t where you want them to be, kick their butt and get them there? Carefully, of course, you don’t want to run low. I don’t think that it’s a huge risk though to adj a carb ratio a unit or two to see what happens? I am super conservative during the week for breakfast and lunch so if the numbers get off, I’m pretty sure that something has changed, like metabolically or whatever, and I just blow it up with the insulin pump. It’s probably a bit dicier with shots but if you are using ratios, etc. and are a “computer person” (I think you posted that somewhere else?) you should be able to at least push things in the right direction? If you make any hint of progress, then you know you are right and pretty much have it down.

Usually when I hit the 30s I have super munchies and want to eat everything in the fridge. Once I lit an ice cream carton on fire b/c it wasn’t soft enough to scoop so I broiled it but got distracted eating something else. Ooops.

Also, if your BG is dropping 100 points/ hour without any bolus on board (that’s missing and I’m assuming…) is it possible that you are overbasaling b/c your carb ratio is too low? I am fiddling around with this lately, turning basals down a bit and turning my carb ratios up a couple of notches. I also ditched a large chunk of peanuts I was eating every day and so far so good. Maybe looking at it that way can fix that? I think basal lows are mo

Hi acidrock23, thanks for your thoughtful post. I love your story about the ice cream on fire. That’s got to be a first. Next time, try :10 in the microwave, but take out the spoon first, OK?

I think I ate about 1,500 calories after my first hypo. I was ravenous!

I am tweaking my Lantus now to get my basal values in the right place; then I’m going after the Novolog. I’m adjusting it up two units and then watching my basal readings (anything six-plus hours after eating/bolusing) to see where they’re falling.

Last summer, when I went way hypo, I was only using Lantus and quite a bit more of it (two shots per day) but I was also starting a new diet and exercise program and not really keeping up with dropping the Lantus fast enough. My insulin resistance goes WAY down pretty fast when I get serious about walking every day. That’s GOOD news, unless my insulin dose is in the way, so to speak.

Through experimentation (also known as, running headlong into brick walls) I’m learning that my number one problem is I absolutely MUST exercise every, single day (I can miss maybe one day every two weeks and not pay for it immediately) to keep my insulin resistance in check. But if I get sick, or injured, or overwhelmed at work then my BG’s go crazy. I can count on it.

Anyhow, I’ve been scared to adjust my insulin myself and kept “obeying” my doctors when they told me to not adjust it myself, but now I’ve got the bit in my teeth. I’m sick of them giving me poor advice and then abandoning me (not the new guy, he can’t help having the flu.) Anyway, I’m reading lots of books and websites and working up my courage to start tweaking things myself. Somehow I’ve been too afraid to do it but that was a healthy fear because I simply didn’t know enough. The more I read, the more I learn, the more I test and pay attention to what happens, the more hypos I survive (three so far) the less scary it all is.

No one on my imaginary “team” told me how to do any of this crap – obviously becaus

If you are adding in exercise, I think that’s great, not so much from a people with diabetes perspective but more from a human perspective. There’s sort of a circular argument there but exercise is sort of like insulin. If you get results from exercise then it would seem logical (which again, is sort of like your programmer background?) to damn your docpedoes and adjust your insulin yourself. Adjusting basal 5%, if you are taking some small amounts or maybe 10% if the doses are huge with the alleged insulin resistance (I am thinking that “insulin resistance” is the new “brittle” but I know that some people use U500 too so there may be some type of medical foundation for it…I’m sorry I don’t recall your case history if you posted it somewhere…) or maybe just the “resistance” just means your doses are off a bit? I get all freaked out if I get a 120 or 130 but I also see that if I make a small (.05/hr) adjustment with my pump, I will see results that stick out to me almost immediately and either stop or go farther depending on what I’m looking for. I totally don’t understand dealing with a doc who told me not to adjust stuff. I had all sorts of crazy assed hypo sagas, pounding my head on a concrete floor, driving a car over the wall of a parking garage, etc. but am not ‘scared’ of them as looking at them as being sort of engineering mistakes but I don’t do things scientifically? Even if your doctor told you not to adjust your insulin, if you adjust it and get a decent result 1) you should feel good about a good result and 2) you can tell your doctor to shut the hell up and that you think that this change worked so you are going to try other changes. If it DOESN’T work, you can tell me to shut the hell up and that you are going to listen to your doctor and I will disclaim any responsibility for a mistake since I don’t have nearly enough data or sense for what’s going on to make any suggestions anyway? But I do think that change is an important part of managi

We keep getting cut off, LOL. This is like talking on the old phones where you had to put in more change or they’d hang up on you.

I’m telling everything out of order – it’s been more than a bit of a saga (isn’t it always?)

But the bottom line is that I’m a type 2, diagnosed in 2002, with no genetic markers for type 1-ness but lots and lots of insulin resistance. I’m injecting 44 IU of Lantus in the mornings right now (vs. the 40 a.m. and 40 p.m. I was injecting last summer at the time of My Big Hypo) for complex and convoluted reasons that can be summed up as:

Switching doctors three times in seven months in my quest to find a doctor who would help me, support me and not fight me as I increased my exercise (training to walk a 10K) and transitioned to a very low carb, Bernstein-type protocol, in a valiant effort to get my HbA1C down from the 10’s to the 5’s.

After hovering around the computer, waiting for my HMO doctors to reply to my e-mails, getting non-response responses (“Those are all very good questions.” Pat, pat, pat.), waiting forever for appointments, getting four minutes of “quality” time, etc. I was about to climb out of my skin with frustration at the whole “Doctor Knows Best” meme. But then the subversives on the interwebs (who shall remain nameless) enlightened me: diabetics adjust their own insulin.

Well, HELLO !

Of course they do. If they didn’t, no one who’d been diabetic for more than a decade would have eyes that work or feet, because if you wait around for the Medical Deities to tell you what to do, you could quite literally go blind.

I would also suggest making the a goal more incremental? To go from 10 to 5 would likely be very difficult and perhaps discouraging but if you aim for 8 and then 7 and then 6, etc. perhaps it will fall into place more effectively? Similarly, w/ doses, if you are like 30-40% below the amt of basal and your numbers are high, it might be worth it to nudge it up a bit but not a huge amount, 5%, see how the change works, if you can discern an impact on your BG, etc. It sort of sucks but doing a repetitive, measured diet can help with that a lot too, as you would sort of have a “control group” with which to evaluate your results?

I agree too that switching doctors could cause problems with organization or whatever. I’m not sure how to suggest evaluating them though as I don’t have that many issues with doctors, perhaps because I run my own show?

Thanks, those are all excellent suggestions.

I actually have incremented down my A1C: 10.8 in March, 10.7 in August and now 9.1 in January, but it’s just way, way too slow – I can hear my poor little capillaries and nerves screaming as it creeeeeeeeps down. Most of that drop (almost two points) was from increasing my exercise while training to walk a 10K, but I was terrified of hypos the whole time because I didn’t understand what was causing them or how to cope with them. Now I know that they’re almost always just speed bumps, not the death of zillions of brain cells, so I’m not so afraid.

I just know I can drop my A1C a bit more briskly without going hypo-mad by learning how to intelligently, effectively adjust my own insulin.

I think you’re right: if you’re knowledgeably running your own show, then the hijinks of doctors becomes much less threatening to your well-being.

Being passive sucks and I’m done with it. If I was waiting around for my old doctor to take charge, my next A1C would be in the 11’s, not in the 8’s or better. She simply had no interest in doing anything to help me.

I’ve already bumped my Lantus from 40 to 42 to 44 without “permission”, splitting the injection into two sites to boost absorption, giving it a week to ten days between bumps to see how things shake down.

Look at me: I’m a wild thing. ;0)