Breaking the Rules

Disclaimer: I'm not a medical professional, just another diabetic, so don't take what I do as correct...it's just what I do.

We had a series of thunderstorms this week, and my 90 year old father-in-law lost his power. So he came to spend the night with us. We got up early the next morning, and he was stressed out about getting home...insisting he needed to take one of his medications right at 6:45 am. We took him home right away. This may have been right for that medication, and perhaps a few minutes on either side would really matter.

Since then I've been feeling resentment about the many "rules" that I was told early on applied to my diabetes care. I know the folks who taught me these rules were erring on the side of caution, and telling me what they were legally bound to say. But diabetes puts enough demands on life that I don't need any "extra" ones. Early in my diagnosis, I didn't know how to sort out what was really critical, so tried to follow everything to the letter. Here are the ones I can think of that I have kicked to the curb over the years:

1. Change your lancet after every use -- umm once in a blue moon
2. Swab your finger with alcohol before you do a finger stick -- never
3. Swab your injection site, pump site, CGM site with alcohol prior to injecting (or inserting) -- never, just make sure area is clean
4. Always refrigerate your insulin -- I used to stress over whether there would be a fridge at hotels, now current bottle stays at room temp and additional supply is in fridge at home
5. Change your pump site every 2 days -- umm 4 or 5 days usually
6. Change your CGM site every 3 days -- I lie to my pump -- telling it I have a new sensor when I really don't -- so I can use for each sensor for 6 days. The poor thing has yet to wise up!
7. Take Lantus at same time every day -- early on I was dogmatic about this, but soon found out that for me the darned stuff didn't last 24 hours anyway
8. Swab top of insulin bottle with alcohol -- never

How about you? Are you a diabetes renegade?

CGM Truth or Dare??

Last week the curtains were pulled back to reveal a 24X7 movie of my BG control. There was no red carpet rollout for the premier, but it was a big event for me nonetheless. I started on a new Minimed pump and CGM last Thursday.

First, I was giddy with being able to see so much more about what is happening, and just kept looking at the trends in a distant sort of way, as if they were not really connected to me. This week, reality is starting to sink in, and I'm faced with some things that I need to change if I want to improve my control. Like cutting out the late night snacking, and upping my basal rate after I workout. Both of those things are scary to me in their own ways. Even though I may have suspected them before, now the data is smacking me in the face and hard to ignore. No more namby pamby..."I'm not really sure what's happening so I'll just keep doing what I want to." I know this is a good thing, but as with facing any challenge, there is emotion and resistance to overcome.

So I guess it's really more of a game of truth AND dare now, isn't it?

To reschecule or not to reschedule....

....that is the question.

I had to cancel my endoc appt. 2 wks ago due to a stomach bug, and have yet to reschedule it. I guess there are two components to my reluctance. First, I have the feeling my A1C will not be stellar. I'm always thinking that though, and am usually pleasantly surprised with the results. So the bigger factor is that I still feel like I don't get much help from my endoc other than ensuring a signature on those prescriptions.

When I mentioned to a friend at church who is a nurse that I had to cancel my endoc appt and mammogram last week, she got this worried look on her face and said something like "Oh, wow, that's not good, will you be OK until you can get in to see your endoc?". A nice well-meaning question, but pretty far off target. I replied, "I've been at this a long time, and really the endoc doesn't tell me much I don't already know." Probably sounded arrogant, but it's true.

Last time, I asked him for help in avoiding lows while running. He said I could fax him some numbers and handed me a worksheet with blanks for only before and after meals, no space for a pump basal rate, etc. I asked if I could send him a spreadsheet instead that included room for more testing, carb intake, etc. surrounding exercise, and he said they preferred all patients to use their (totally inadequate) form. This really should not upset me that much since I have a history of not doing a very good job of logging anyway. But it was just a sign of being alone in managing my diabetes, and has rattled around in my brain since then. Were it not for this wonderful online community, I would feel very alone with it indeed.

On the plus side, he did suggest I look into CGM's, and would likely be willing to help me get one. He was also very helpful when I had a pump malfunction that required me going back to shots for a little while. I'm probably looking for too much in a doctor, and this one isn't bad. So I guess I just need to book that appointment. Maybe I'll call...tomorrow.

I'm also curious...how many of you feel that you genuinely get help with your specific issues from your endoc/diabetes team? Am I expecting too much?

Am I Borg?

Had a weird dream last night. I was on an elevator with a bunch of strangers when I realized that my infusion set was in my cheek. No, not THAT cheek, the one on my face! It was the same feeling as the "realizing you are naked at school" dream. So what does this mean? Do I secretly want to be a member of the borg collective? Or could it be that I still feel self conscious about my pump? Or is it that I think it might be better if others had to truly come face to face with at least one reality of diabetes? It really is a hidden disease in so many ways, even for those of us who are pretty open about having it. How about you? What weird D related dreams have you had?

Multitasking

Multitasking is a way of life. I ususally blame that on e-mail, voicemail, blogging, cell phone, blackberry, and other technological "advances". But I realized this morning that it has invaded my site change routine. While changing my set and cartridge, I also brushed my teeth, applied base makeup, and worked some conditioning cream through my hair. You know, there are those pauses while the pump realizes you've pulled out the old cartridge, and while the new cartridge is loading. Perfect time to trim your nails.

So is this odd? Do you multitask as you are changing out your set/cartridge? What things do you accomplish amongst the whirring and beeping of a cartridge loading?

REQUEST FOR CGMS: DENIED BY INSURANCE

I didn't ask to have to worry about whether I will go low when I go for a run or even a walk, go to sleep, or God forbid, while I drive. I keep my blood sugars higher than recommended sometimes because there are so many unknown variables and the lows are debilitating. In case you are wondering, it's not a simple case of counting carbs and taking the right insulin doses. There are hormones, activity levels, and stress to try to "quantify", which is of course impossible. That is where a CGM could really help. Since we cannot account for everything, the best we can do sometimes is react to it. A CGM will help us to react faster, and to avoid the short term disaster of a severe low behind the wheel, as well as some of the long term damage that our bodies are racking up due to BG's that are too high as we try to avoid those lows based on as many test strips as we can afford. It would also help me to not lose heart in my battle to remain as healthy as I can.

My doctor suggested I look into getting a CGM, but so far I have found that I cannot afford it. Aside from the initial outlay for the device, the ongoing costs are roughly $400 per month. Trust me, I have no desire to wired up like a cyborg with my insulin pump and yet another device. But it is difficult to know that I cannot afford to come one step closer to a normal life. I don't know whether to address this to the insurance companies, the CGM manufacturers or our government, but I sincerely hope that all of them will hear our plea.

I Just Might Make It

It seems like a long time ago that I signed up for the Diabetic Runner Challenge (see emblem on the lower right side of my BLOG). The challenge was to run 500 miles this year. I know the emblem says 1000 miles, but I picked the wrong emblem :(.

The last 6 months has not been a stellar time for me in terms of logging a lot of miles, but I did enjoy a few 5K's in the spring with progressive personal records, and have been doing a few shorter runs per week. Now it's mid-year, so figured I'd check my mileage total. Total miles logged on my Garmin....284. Woooohoooo, I just might make it!