Today is ten years since I was diagnosed with diabetes and put on insulin!
At diagnosis, my A1c was something above 16% (could not be measured). The 28 readings since then have ranged from 6.0 to 7.2 and averaged 6.55.
I have spent roughly 7.5 years on Lantus, 1.5 pumping (regular), and 1 on NPH. I have spent roughly 5 years on Novolog and 5 years on Regular (the Novolog came first, just to be clear). I've gotten my insulin through NovoPen Jr, syringes, a minimed pump (the steel cannulas aka needles were the only way that worked) , jet injector, and a few other pens that I didn't use regularly. I've used two meters as my main meters- Accu Check Aviva and Relion Prime- and at least a half dozen others supplementally. I've used two types of minimed CGMs and two types of Dexcom CGM sensors with three types of monitors. I've spent about 4 years not CGMing.
I spent a few years (maybe 3?) counting, though not limiting, every carb I ate. I spent another few years (maybe 3?) counting carbs more sporadically, and the last few years not really counting carbs at all.
I have not taken any other diabetes medications (but I have gotten my flu vaccines).
Complications wise:
I've had dilated eye exams about annually and no abnormality has ever been noted. My myopia hasn't been entirely stable. And my night vision has noticeably gotten worse; I think that my peripheral vision has too although my eye doctor says I'm fine.
I've never had an EMG, and haven't had any tests of sensation in some years. However, I do not have a neuropathy diagnosis or any major symptoms of neuropathy.
My eGFR is fine. My urine has contained elevated microalbumin sporadically but has been totally normal for a few years now, including when tested two weeks ago. My blood pressure is fine.
Regarding lipodystrophy and scarring- the insulin pump folks strongly suggested that my difficulty with kinking cannulas was due to internal scarring. Perhaps. I did at one point develop some lipodystrophy in my thighs, which disappeared after about a year of not injecting there. I am currently injecting there without any issues. I have not had any flagrant problems with absorption except with cannulas.
My hearing hasn't ever been formally tested. My impression is that it's gotten somewhat worse over the last ten years, but normal hearing in a 27 year old is somewhat worse than normal hearing in a 17 year old anyways.
My dental health is not great but the only tooth I've had pulled was a wisdom tooth and none have fallen out, so that's something.
I have had no infections that would indicate poor circulation or impaired immunological function.
Other than at diagnosis, I have not had a blood sugar related hospitalization or emergency room visit- no DKAs, NKHHSs, or hypoglycemic episodes of severe symptomaticness. In fact, my hypoglycemias have gotten considerably less problematic and symptomatic over the years.
Changes in the diabetes experience:
I've become less emotional and less interested in my diabetes.
I've tended to run more dramatic highs and less dramatic lows.
My insulin sensitivity over the last few years has been dramatically higher (with an ISF around 100) as compared to my first few years (when the ISF was about 35). I have persistently had higher basal needs at night.
My overall health has been better over the second five years as compared to the first five. During the first five years, I developed several major health problems and had my gallbladder removed and subsequently developed gallstone pancreatitis. I also had subacute thyroiditis and pain in my neck for roughly two years, and swelling in my hands and one foot (and a knee). I also experienced a cognitive decline that was very significant to me.
In my second five years, I've just about recovered from the pancreatitis, at least pain wise, have had no thyroid problems, way less vomiting (yay!), no cognitive decline I'm aware of (although I certainly haven't recovered to where I once was). I have had some issues with my feet, and the issues with swelling in my joints haven't disappeared.
Notably, I've worked full time only in the last few years.
Looking at the next five years or the next ten years, I think that my current health is a positive indicator. I'm hopeful that the next ten years will continue to see me staying out of the hospital, at least for diabetes related reasons. I'm hopeful that I will maintain blood sugars around the same as I have, though it would be nice to see an A1c in the 5s at least once. I suspect that I will stay on Regular and NPH, because they're cheap, but I don't know- the market and what's available may change. And maybe I'll even return to pumping. I'm not CGMing now, but I think it's likely I will resume doing so at some point. I'm hoping to get another jet injector, one where a continual supply of vial adaptors is available. I think it's probable based on epidemiological data that I will develop detectable retinopathy in the next decade, but am hopeful it will not be vision-threatening. My weight remains at the bottom of the normal range for my height, but given its stability over the last few years, I'm hoping it will just stay there.
I anticipate my biggest challenge over the next ten years will not be managing my diabetes- it will be parenting and balancing parenting with everything else I need to do. My (foster) son, hereafter referred to as just my son, spent every weekend with me over the summer and officially moves in tomorrow. He's a handful! So far I haven't really had a problem managing diabetes with him around although I thought I would.
Some anonymous soul asked if I am a vegan minimalist and why I don't talk much about diet. I don't know what a vegan minimalist is. I don't talk much about diet because I didn't change my diet for diabetes. Depending on your standards of vegan, I may or may not have been eating a vegan diet for the last sixteen years- which is six years longer than I've been aware of having diabetes, and which is also more than half of my life. I give it about as much thought as I give the fact that I don't drive. It's very background to my life. I think, and have said so here numerous times before, that there isn't any one diet that's best for diabetes, or for people in general. I think there's pretty good evidence that a vegan diet can be healthy, and no evidence that it's unhealthy in my case. I think there's a lot more evidence that driving is unhealthy. But unless you like poring over maps, it's just not a really interesting topic.
Thursday, September 01, 2016
Tuesday, August 30, 2016
You remember how I used to complain all the time about how the Lantus advertising is totally misleading because it lasts way longer than the 24 hours it claims, because the study including in the package only shows the first 24 hours?
Well here's a study by folks making generic lantus that shows that it lasted more than 42 hours in 14 out of 40 subjects:
http://www.ncbi.nlm.nih.gov/pubmed/27484286
That's 35% of people.
Well here's a study by folks making generic lantus that shows that it lasted more than 42 hours in 14 out of 40 subjects:
http://www.ncbi.nlm.nih.gov/pubmed/27484286
That's 35% of people.
Friday, August 12, 2016
Longer Letter Later
I was absolutely flabbergasted to see the results of Wednesday's A1c: 6.2!
This after four months of no CGM, on NPH and Regular (albeit mostly through the jet injector, where absorption is good). During this time I had a vial of insulin go bad on me even, more than four months of not having prescriptions for a single one of my diabetes supplies.
I had been pretty sure this A1c was going to be in the 6.8-7.2 range and was bracing myself for higher. I had said to the doctor I would want to resume CGM usage if my A1c was above about 6.5, which I was sure it was... and it isn't! So I guess I'll continue not CGMing.
I just had to share my good news.
This after four months of no CGM, on NPH and Regular (albeit mostly through the jet injector, where absorption is good). During this time I had a vial of insulin go bad on me even, more than four months of not having prescriptions for a single one of my diabetes supplies.
I had been pretty sure this A1c was going to be in the 6.8-7.2 range and was bracing myself for higher. I had said to the doctor I would want to resume CGM usage if my A1c was above about 6.5, which I was sure it was... and it isn't! So I guess I'll continue not CGMing.
I just had to share my good news.
Wednesday, August 10, 2016
Thoughts on being a health (semi)professional and a diabetic at the same time
3 years ago I became a CNA, which stands sometimes for certified nurses' aide and other times certified nursing assistant, and usually is just called by the letters CNA. In Illinois, CNAs are required to have taken a course, done clinicals, pass an exam, and demonstrate competence in 17 tasks, from hand washing to making a bed with somebody in it, to taking blood pressure. In my actual job, I did in fact hand wash (lots), make a bed (only a couple times with somebody in it), and take blood pressure (lots). I also did a lot of monitoring people, talking, escorting people various places, refereeing, laundry, reminding people to take their medication, etc. I also did a lot of assisting my supervisor and the nurses with whatever I could.
A couple weeks ago I got a promotion to Wellness Coordinator, which means I'm in charge of making doctor visits and ensuring people get to them, and also scheduling CNAs, and that I'm part of hiring a replacement CNA. So I've been thinking about writing about what it's like to be on the managerial end of the hiring process, as this is a first for me. However, if you're reading this blog you're almost automatically somebody I would hire (if you were qualified and actually wanted the actual position I'm hiring for- some people apply but then aren't available at the times I'm hiring for or are imagining some more glamorous job).
So another job related thing I've been thinking about writing about: as you know, I identify myself as diabetic. Not a person who so happens to have diabetes, but diabetic. I originally did it in the hopes that I could integrate diabetes into my identity, in the belief that that would be a happier and healthier way to be; I've come to feel that it also helps with being responsible.
In my job, I often encounter people whose diabetes has caused all kinds of problems for them (as well as people whose diabetes has nothing to do with why they need care from me and people whose diabetes needs care but hasn't caused significant complications). I've worked with people whose diabetes has resulted in their losing their vision, their kidneys, their gastric motility, sensation in large parts of their bodies, jobs and job prospects, and their lives; they've had congestive heart failure, heart attacks, strokes, early onset dementia, UTIs, lots of infections, transplants, the works. Their diabetes control ranges from extremely good to extremely bad, although almost all have had some real variation where they had some years that were much better than others.
I identify with all of our diabetics- though much more so with the younger onset ones- to a degree that I do not identify with my other charges.
When the young diabetic doesn't comply with the (really difficult to comply with) instructions after surgery to reattach her retina, I take it personally in a way that I don't when a guy whose retina detached for non-diabetic reasons also doesn't fully comply.
When our only 50 year medal eligible patient was belligerent I found compassion coming to me more easily than with other belligerent folks.
I struggle with thoughts about control. The majority of patients I've seen with complications from diabetes have significantly worse diabetes control than I do... but then, so do those without complications, and some of those with complications have better control than I do. Some of our diabetics with major complications tell me that because they were afraid of lows or because they didn't want to deal with diabetes at school, or because their home life was so bad they enjoyed being hospitalized, they skipped shots or purposely ran high. I don't know what to say when somebody who went blind due to type 2 diabetes in his 40s and whose blood sugar is normal except when his eating isn't, tells me it was worth drinking the 2 two liter bottles of soda he drank, or that last night he ate (another) whole box of donuts. Or when somebody tells me he was so afraid of lows on the job that he purposely ran in the 400s... and now he's waiting on a fifth kidney. Or when somebody says he would skip shots because the hospital was nicer than his foster home- and now the nurse doesn't think he'll see 30.
I ran a diabetes class for some years at my facility, and got a significant audience- mostly of non-diabetics who wanted to know how to support their friends or understand what they were going through, as well as a sprinkling of prediabetics and the worried well. Soon I'm supposed to be taking a diabetes training course that authorizes me to teach a diabetes course that I'll be required to teach. At those times, my living with diabetes lends me legitimacy- but I think my education and the living with diabetes together are better there because lots of the folks I work with have had diabetes a long time but are really not folks you'd trust to teach about diabetes.
In a few weeks I will hit 10 years from my diagnosis, and today I went to see my doctor, so in a couple weeks I think I'll be posting with an update on my health, but, spoiler, I'm pretty healthy. Although I think that there are lots of things that go into that, including luck, and although I know that 10 years is definitely not long enough to declare anything about my future health, I think my determination to integrate diabetes into my sense of self has helped.
A couple weeks ago I got a promotion to Wellness Coordinator, which means I'm in charge of making doctor visits and ensuring people get to them, and also scheduling CNAs, and that I'm part of hiring a replacement CNA. So I've been thinking about writing about what it's like to be on the managerial end of the hiring process, as this is a first for me. However, if you're reading this blog you're almost automatically somebody I would hire (if you were qualified and actually wanted the actual position I'm hiring for- some people apply but then aren't available at the times I'm hiring for or are imagining some more glamorous job).
So another job related thing I've been thinking about writing about: as you know, I identify myself as diabetic. Not a person who so happens to have diabetes, but diabetic. I originally did it in the hopes that I could integrate diabetes into my identity, in the belief that that would be a happier and healthier way to be; I've come to feel that it also helps with being responsible.
In my job, I often encounter people whose diabetes has caused all kinds of problems for them (as well as people whose diabetes has nothing to do with why they need care from me and people whose diabetes needs care but hasn't caused significant complications). I've worked with people whose diabetes has resulted in their losing their vision, their kidneys, their gastric motility, sensation in large parts of their bodies, jobs and job prospects, and their lives; they've had congestive heart failure, heart attacks, strokes, early onset dementia, UTIs, lots of infections, transplants, the works. Their diabetes control ranges from extremely good to extremely bad, although almost all have had some real variation where they had some years that were much better than others.
I identify with all of our diabetics- though much more so with the younger onset ones- to a degree that I do not identify with my other charges.
When the young diabetic doesn't comply with the (really difficult to comply with) instructions after surgery to reattach her retina, I take it personally in a way that I don't when a guy whose retina detached for non-diabetic reasons also doesn't fully comply.
When our only 50 year medal eligible patient was belligerent I found compassion coming to me more easily than with other belligerent folks.
I struggle with thoughts about control. The majority of patients I've seen with complications from diabetes have significantly worse diabetes control than I do... but then, so do those without complications, and some of those with complications have better control than I do. Some of our diabetics with major complications tell me that because they were afraid of lows or because they didn't want to deal with diabetes at school, or because their home life was so bad they enjoyed being hospitalized, they skipped shots or purposely ran high. I don't know what to say when somebody who went blind due to type 2 diabetes in his 40s and whose blood sugar is normal except when his eating isn't, tells me it was worth drinking the 2 two liter bottles of soda he drank, or that last night he ate (another) whole box of donuts. Or when somebody tells me he was so afraid of lows on the job that he purposely ran in the 400s... and now he's waiting on a fifth kidney. Or when somebody says he would skip shots because the hospital was nicer than his foster home- and now the nurse doesn't think he'll see 30.
I ran a diabetes class for some years at my facility, and got a significant audience- mostly of non-diabetics who wanted to know how to support their friends or understand what they were going through, as well as a sprinkling of prediabetics and the worried well. Soon I'm supposed to be taking a diabetes training course that authorizes me to teach a diabetes course that I'll be required to teach. At those times, my living with diabetes lends me legitimacy- but I think my education and the living with diabetes together are better there because lots of the folks I work with have had diabetes a long time but are really not folks you'd trust to teach about diabetes.
In a few weeks I will hit 10 years from my diagnosis, and today I went to see my doctor, so in a couple weeks I think I'll be posting with an update on my health, but, spoiler, I'm pretty healthy. Although I think that there are lots of things that go into that, including luck, and although I know that 10 years is definitely not long enough to declare anything about my future health, I think my determination to integrate diabetes into my sense of self has helped.
Wednesday, February 10, 2016
Tuesday, January 19, 2016
Updates
I still haven't gotten internet on my phone or in my new condo, which has a lot to do with why I haven't updated this lately. Yesterday I went over to my parents' place in order to check my email and while I was at it I thought I'd follow up on a few things I'd been wondering about diabetes wise. Maybe you haven't wondered enough to look it up either:
Q1. So did they come out with anything really left-field about diabetes lately? Anything in the realm of a cure?
A1. No.
Q2. Now that Lantus is no longer protected by patent, has anybody made a generic available in the US? Talked about making a generic?
A2: Glad you asked! It's even more complicated than that. Only three days ago, the FDA approved a second insulin glargine in an accelerated process that doesn't call it a generic, because " No insulin glargine products are currently licensed under the Public Health Service Act, so there is no “reference product” for a proposed biosimilar product.".It is going to be sold by Eli Lilly in disposable insulin pens only, and not until December 2016. There's no word as to cost, but given that it will be available in pens only, and that the seller will be Lilly, I'm guessing it's not going to signal a really dramatic decrease in cost. But it should still curtail the price hikes that Lantus has had in the past few years.
Eli Lilly was required to do some human testing with their product, and the tests showed worse blood sugar control with their insulin glargine vs lantus, but not dramatically so, therefore it was declared "non-inferior".
Q3: Some time ago, I got an email from minimed saying they had a NEW more accurate version of the enlite sensor. How's that new version of the enlite perform anyways? When my dexcom breaks down, should I consider switching back?
A4: As far as I can tell, the new sensor is only available in Europe (so why'd they email me? Don't know). The UK minimed site states: Data on file ER13-7989 Enlite with MiniMed Paradigm® Veo™ System has a MARD of 14.2 % while Enlite with MiniMed™ 640G System has a MARD of 13%.
In comparison, Dexcom G4 with the old software had a MARD of 13%, and according to Dexcom, the new software improved performance to 9%.
So if accuracy is your only consideration, you shouldn't consider the new Enlites. Given cost however... and my pump is still under warranty.
Q4: What new diabetes studies are being conducted in my area?
A4: Well, there's a study on using dapaglifozin in type 1 diabetics. I am still of the opinion that this medication is likely to lead to so much increased kidney mortality that it will eventually be recalled. I would not recommend enrolling in this trial.
There's another study on the insulin patch Finessa, which has already been FDA approved but which you can't buy yet.
There's a few studies trying to treat newly diagnosed type 1 diabetics, and one that aims to compare the intestinal flora of the newly diagnosed to healthy people; that strikes me as being difficult to really control.
Myself, after finishing up with the pump supplies I had in November, I used a vial of Lantus for a month and I moved onto NPH about six weeks ago. For whatever reason, using NPH this time has been much smoother than it was when I tried it last time, maybe because I'm taking it at different times of day (midmorning and bedtime rather than breakfast and supper).
Did I say blood sugar has been smooth? Exclude the last few days- I've been having digestive problems where I eat a meal (after injecting Regular), go low, stay low for a while (like a couple of hours), and then shoot way up.
I am still in the licensure process of fostering and/or adopting in Illinois, but a few weeks ago I met a child who is being considered as a potential match with me (I say YES but there are a lot of agencies involved that all have to also approve). He is not diabetic.
Q1. So did they come out with anything really left-field about diabetes lately? Anything in the realm of a cure?
A1. No.
Q2. Now that Lantus is no longer protected by patent, has anybody made a generic available in the US? Talked about making a generic?
A2: Glad you asked! It's even more complicated than that. Only three days ago, the FDA approved a second insulin glargine in an accelerated process that doesn't call it a generic, because " No insulin glargine products are currently licensed under the Public Health Service Act, so there is no “reference product” for a proposed biosimilar product.".It is going to be sold by Eli Lilly in disposable insulin pens only, and not until December 2016. There's no word as to cost, but given that it will be available in pens only, and that the seller will be Lilly, I'm guessing it's not going to signal a really dramatic decrease in cost. But it should still curtail the price hikes that Lantus has had in the past few years.
Eli Lilly was required to do some human testing with their product, and the tests showed worse blood sugar control with their insulin glargine vs lantus, but not dramatically so, therefore it was declared "non-inferior".
Q3: Some time ago, I got an email from minimed saying they had a NEW more accurate version of the enlite sensor. How's that new version of the enlite perform anyways? When my dexcom breaks down, should I consider switching back?
A4: As far as I can tell, the new sensor is only available in Europe (so why'd they email me? Don't know). The UK minimed site states: Data on file ER13-7989 Enlite with MiniMed Paradigm® Veo™ System has a MARD of 14.2 % while Enlite with MiniMed™ 640G System has a MARD of 13%.
In comparison, Dexcom G4 with the old software had a MARD of 13%, and according to Dexcom, the new software improved performance to 9%.
So if accuracy is your only consideration, you shouldn't consider the new Enlites. Given cost however... and my pump is still under warranty.
Q4: What new diabetes studies are being conducted in my area?
A4: Well, there's a study on using dapaglifozin in type 1 diabetics. I am still of the opinion that this medication is likely to lead to so much increased kidney mortality that it will eventually be recalled. I would not recommend enrolling in this trial.
There's another study on the insulin patch Finessa, which has already been FDA approved but which you can't buy yet.
There's a few studies trying to treat newly diagnosed type 1 diabetics, and one that aims to compare the intestinal flora of the newly diagnosed to healthy people; that strikes me as being difficult to really control.
Myself, after finishing up with the pump supplies I had in November, I used a vial of Lantus for a month and I moved onto NPH about six weeks ago. For whatever reason, using NPH this time has been much smoother than it was when I tried it last time, maybe because I'm taking it at different times of day (midmorning and bedtime rather than breakfast and supper).
Did I say blood sugar has been smooth? Exclude the last few days- I've been having digestive problems where I eat a meal (after injecting Regular), go low, stay low for a while (like a couple of hours), and then shoot way up.
I am still in the licensure process of fostering and/or adopting in Illinois, but a few weeks ago I met a child who is being considered as a potential match with me (I say YES but there are a lot of agencies involved that all have to also approve). He is not diabetic.
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