Saturday, January 25, 2014

Labs Mostly Normal

My rheumatologist does something none of my other doctors do: she mails patients their lab results.
Mine came in the mail today. I had been hoping they would be accompanied by the x-rays results, but they weren't.

She had tested me for hepatitis, which occasionally causes arthritis. My transaminases and bilirubin were normal and I test negative for hepatitis B and C viruses. I also, unfortunately, test negative for hepatitis B antibodies, which means that despite the series of hepatitis B vaccinations I received 15 years ago, I am not currently protected against hepatitis B and, given that I work in health care, should be re-vaccinated.

My white blood cell counts were all normal, my hemoglobin was on the high side at 16.7 g/dl (good enough for me), and my mean corpuscular volume was very slightly high (which it has been before).

My glucose level was 66 mg/dl, which I find concerning because I had just tested with the Bayer Contour Next Link and it had read 81. Grrr. If your bg meter is not accurate, how can your CGM do any better?

My calcium level was slightly high at 10.5 g/dl, which is frustrating- it's been high like that before, which is abnormal enough that I've been tested for a parathyroid tumor, which I don't have. I was going to get more tests back then but it normalized before we got around to it. Maybe now I should have that 24 hour urine calcium test?

My albumin was slightly high, probably from mild dehydration.

The inflammation markers were low, which this lab considers normal. The c reactive protein was undetectable (as always), and the sed rate was 2 mm/hr which is pretty much the same as always.

The doctor note to patient attached said: "Labs mostly normal."

Overall, of course, the doctor is right. These labs are mostly normal; they do not indicate any kind of emergency. And yet I am not comforted.

Friday, January 24, 2014

Hodgepodge Post

Pumping has been  going okay for the last week or so- no site failures. Still, when I saw a new doctor (a rheumatologist) two days ago and she had gotten records from another doctor, and the list of medications I'm on didn't agree with regards from Lantus, and she asked if I was on Lantus, I said no. I said, "I just started pumping so I stopped taking Lantus but I hate pumping so maybe I'll be back on Lantus." I'm not sure why I'm still pumping if the phrase "I HATE PUMPING" comes out of my mouth so readily.

I got a replacement pump but am still using the first one- am going to switch to the replacement one today for my insulin delivery. Have been running both with the same sensor to show CGM data which has been interesting because they have shown identical ISIGs at identical times with different interpretations (for instance, just now one alarmed low and showed 72 with one down arrow while the other alarmed low and showed 72 with two down arrows).

I saw a rheumatologist two days ago. She sent me for x-rays. She says that my symptoms are a "high suspicion for rheumatoid arthritis". She says somebody in his 20s should heal from injuries much much much better than I have. I fingered the diabetes. She said no- she says she doesn't have a whole lot of young diabetics coming in because of long standing pain in their hands- therefore it's not diabetes. So... while waiting for results I am experiencing what I hope are nocebo symptoms of pain throughout my hands and feet.

Lee Ann at The Butter Compartment has been trying to eat vegan and posting about it and also writing about her past with an eating disorder. Which triggers thoughts in me about how, when I was nine, I tried to starve myself because I wanted to die (nope, didn't care about being skinny). It didn't work, but I discovered that I could get a real thrill, a sort of high feeling, off of not eating. When I was ages 13 and 14 and 15, I did not eat (or drink) at all during daylight hours on Mondays or Thursdays. Sometimes the feeling was so good that I extended my fasts to two or even three days. It gave me a feeling of euphoria. Plus I always got sick to my stomach when I resumed eating so I didn't like that. I stopped doing it when it stopped feeling good, when I was 15, which just so happens to be only a few months before the weight loss started that didn't stop until I was diagnosed with diabetes. I sometimes wonder what, if anything, the not eating may have had to do with the diabetes.
Also, I am vegan. I've been vegan now for 14 years, and I am 25 years old, which is to say that I've been vegan for most of my life (vegetarian a couple years longer- vegan since January 2000 and vegetarian since November 1997). I became a vegan because of uncertainty about ethics and a desire to err on the side of caution. I've stayed a vegan for no reason except that it feels right.

Lee at lifeafterdx is a favorite blogger of mine and he's blogged only twice recently- he's had chickenpox. And memory loss from the chickenpox. His blog on the topic of memory loss made me think a lot about my memory loss. Increasing evidence says that it's not so rare for people to have memory loss like mine after DKA. It's been more than 7 years since I was in DKA. My cognitive function and memory have been very slowly improving for years. And yet the difference in my cognitive function and especially in my memory is profound.  I no longer deal with a persistent sense of disorientation. I expect myself to have the capabilities that I really have, now. But that memory loss is still a pervasive part of how I experience everything all day everyday now.

Monday, January 20, 2014

Things I Have Liked About Pumping

I've been pretty down on pumping, and even trying to make a list of good things, I keep thinking- yeah, well, coulda done that on shots. But there are still a few things:

  • Without Lantus coverage, my basal needs become much more transparent. Having tried a pump, I now have a much better idea about what my Lantus was doing (and I think I'll try NPH if/when I return to shots).
  • No Lantus shot. After more than 2500 days in a row with a Lantus shot (I am GOOD), this feels WEIRD. In a good way.
  • Although I have still had lots of lows, it has been easier to avoid them, and especially to avoid a long string of them.  Especially the activity related lows. The my-meal-is-not-digesting lows have been their same horrible selves.
  • Figuring things out about the pump. This does not actually help with anything but my mood.
  •  That it's connected to me! No scrambling around looking for my insulin or syringes or the Dexcom. I just find the infusion site and reel it in.

Thursday, January 16, 2014

Half an hour ago  I got a motor error while trying to correct, for the fifth time in a row, a bg above 250. The infusion site was a sure-T.

And the previous one was so nice too.

Now I have had true failures with ALL of the available infusion sites.

EDIT: Minimed is replacing my pump. The replacement will arrive on Monday.

40 days on the 530 G and I finally figured out that...

 It IS possible to see sensor data on here. You go to utilities in the main menu, then daily totals, then either average or one of the days. Then act. That takes you to a screen that only has insulin delivery stats. Then act again. That takes you to sensor stats, which are SG average, Above Hi Limit, within limits, below low limit, SG Std. Dev., #Hi Alert, #Lo Alert, # Predict Hi, #Predict Lo, #Rise Rate, #Fall Rate, Number SGs. Act again takes you to Meter Stats- BG average, Number BGs, Meter L/H, Manual L/H. Act again takes you back to insulin delivery stats.

BTW, I did look for this almost immediately when I got the pump and numerous medtronic employees couldn't tell me where to find this data (one said he thought it was there but after looking for it for a few minutes he said maybe not on this model).

Sunday, January 12, 2014

It's been a day short of two weeks since I last posted.  I've changed sets seven times since then (seven site changes in 13 days... not exactly 1 change every 3 days!).
I had one more quick set fail (it gave a "No Delivery" alarm the first time I tried to bolus with it, and kept "No Delivery"ing so I pulled it), and one quick set that worked.
I had one silhouette that worked and one that failed (it gave "Motor Error" when I tried to bolus, and I thought the pump itself was broken but the minimed people tell me it was the site).
I had two sure Ts that worked, one ripped out, and I just inserted my fourth sure T. 

Of the sites that DID work, all have been getting pretty itchy and the sites have hard lumps at them when I remove the sites.  It seems to take about a day for them to get itchy.

The CGM portion continues to work fine. I've changed sensors twice since my last post- I changed sensors almost immediately after the post when the sensor went lost. I realized that it seems like when I restart a sensor, they go "lost" 1-2 days later, so I tried with the next one to take the transmitter off and recharge it and see if that helped. It did, but the numbers went wonky a few days later (not in the showing low when high or vice versa category, more like showing 300s when I'm 200s and showing 50s when I'm 90s kind of thing), so that one I wore for ten days.  And the sensors have not been itchy or painful more than extremely slightly- compared to the pump sites they really are not any problem at all.

I am using Novolin R in the pump, and I know that even if I use twice as much Novolin R as on shots, my insulin cost is still down compared to using Lantus because Lantus is expensive (btw, the Brazilian gov't just decided to stop paying for Lantus in light of Sanofi's increase in prices + lack of proof that it does anything better than NPH).
However, it still kind of bugs me how much Regular I'm wasting on priming sites and cannulas and how much more insulin I seem to be using. People told me that on a pump I would have a lower total daily insulin usage. My pre-pump total daily insulin usage over the previous few months averaged 9 units of Lantus and between 23 and 24 units of Regular per day- a TDD of 32 to 33 units. On the pump my TDD has averaged 37 units. It feels like a lot.

My bgs on the pump have included  more numbers above 300 (seven days in the past month with highs above 300), and it's often been hard to get them to go down- the turnaround time on my highs feels like forever although actually it's not. I'm not sure if I've had more or fewer lows. It does seem like I've had fewer severe lows although I've had two really problematic ones (the kind where my thinking is drastically affected) and I'm wondering if that might be because of how much more sleep deprived I am. This thing goes off all night practically every night.

For a somewhat different topic: some thoughts on how the pump's design could be improved:
  • Offer more basal patterns, and let me name them! Not "pattern A" and "pattern B" but "chess day" and "AM work shift" and "saturday". Also, do NOT put a "special status" circle to signify I'm using anything other than the "main" basal pattern.
  • I really miss the Guardian features on this pump. WTF are you doing not letting me see any sensor data other than AUC and the last 24 hours' numbers?
  • Offer bolus patterns, to be optionally linked with basal patterns.
  • Let me customize my IOB features- let me program in what percentage of the insulin is used up in what amount of time. Because the available options just aren't my reality.
  • When I'm running a low basal rate, like 0.150 u/hr, I'm aware that means that I'm getting 0.025 units six times per hour. I'd like to know what six times, so that if I want to disconnect for five minutes, I can pick five minutes when it wouldn't be giving me any insulin anyways.
  • On the CGM, it would be nice to have two separate high threshholds. Alarm at me when I hit 160 and if I stay above 160 for three hours... but also alarm earlier if I hit 260 (for example).
  • Don't go to lost sensor in just 40 minutes please.
  • Make a stronger transmitter. It's pathetic to have it lose the signal just because I rolled half way over in my sleep.
  • Boluses often take a long time to deliver- if I want 8 units for breakfast, that takes two or three minutes. That's fine. What's not fine is that for that whole time, I'm locked out of changing my basals, changing anything in the sensor (like entering in a calibration, or telling it to find lost sensor, or changing glucose limits). Come on!
  • It is extremely not cool that a site that is marginally working does not trigger any alarms. I got ketones and lots of high blood sugar without any kind of alarm except for high alarms when I had a cannula folded in half. Apparently if a little insulin is making it through every now and then it doesn't trigger alarms as much. Not cool.
  • The buttons to turn on the backlight and to go to the Bolus Wizard only do those things from the home menu. If it's the middle of the night and I want my backlight, and I don't know what screen I'm on 'cause I can't see it, that is really really annoying. Give me a backlight button that works no matter what screen I'm on. 
  • If a bolus is in progress and I want to cancel it, I should not have to suspend the pump. There should be a menu on the bolus screen where I can arrow down and cancel bolus in progress.