The diabetes search engine now has about 900 sites and pages that it searches for information all about diabetes. So far the advertising revenue is about $55 and that's all going to Dr. Faustman's research at MGH.
Here's some of the sites that I just added recently.
The misadventures of peabody is a new blog from emily who was diagnosed with type one in March 2008. That's about seven weeks ago. Drop by and welcome her to the diabetes OC.
The ultimate hike for a cure! Ty Hover is either crazy or wildly ambitious. He's planning to hike from Detroit to Alaska and raise $290,000 towards diabetes research along the way.
The lucky druggie is a blog by Jessica who was diagnosed in January 2007. Today is her 19th birthday, drop by and say hi to her.
Diabetes365
There are now over 4,500 pictures in the Diabetes365 project with more being added every day. Several have been used by the media.
If you'd like to learn how diabetes affects us or makes us feel drop by and have a look. If you do decide to use a picture for any reason, do pleaseask the photographer and give attribution.
I use this term for a product that you may already like that then surprises you with a feature that you didn't even know existed. Like a car that turns off the interior lights before the battery runs dead, even if you'd left them on by accident.
I had one of those experiences today with my Cozmo. Yesterday my pump had started to complain that the battery was almost empty. And today I was running on voltage fumes.
I knew that I had to replace it, but I kept forgetting to. That is, until I was putting in a combination lunch and correction bolus. While the pump was delivering the bolus I decided to test what would happen if I removed the battery, essentially mimicking loss of power.
After replacing the battery I was pleasantly surprised to see a Bolus Interrupted message on my Cozmo. This is the kind of attention to detail that I've seen in other parts of the Cozmo pump. Those firmware engineers (the folks who write the code that runs the pump) really thought about this - good for you folks!
Dexcom delights
Another customer delight for me, this time from those great Dexcom folks. Today I got the new Dexcom CGM model to try out for a week or so (one sensor life). I'm going to replace my 16-day old sensor this evening and tomorrow I plan to try and use both receivers against the same sensor and see what happens. I'll use the OneTouch meter with the older receiver and my AgaMatrix WaveSense meter to calibrate the newer receiver.
What I'm hoping is that the newer receiver will show my readings to be higher that on the older receiver. If I'm right then it may prove my theory for my A1C being higher than expected.
The trial model also came with the slightly newer version of the Dexcom software. They've re-introduced the modal day view, which is very useful when you want to see recurring patterns in a number of days.
I'll blog about the new receiver and software after I've had a chance to play with it for a few days.
Note: I currently own shares in Dexcom, I try not to let this ownership influence what I say about the company or its products.
The capsules are being tested at Hadassah Medical Center in Jerusalem on 10 patients with type 2 diabetes.
Phase 2 is where potential drugs are tested to see if they're safe and they work (efficacy). The capsules will need to complete a phase III trial before they can be sold to people with diabetes.
The main challenge to taking insulin by mouth is that the insulin protein is broken down in the stomach before it has a chance to be used by the body. Oramed claims to have solved this problem and the challenge of getting the insulin through the walls of the intestine.
Prof. Hanoch Bar-On, a leading Diabetologist on the Oramed team, states that the route of the insulin from the swallowed capsule “imitates nature” in that it passes to the liver and then to the bloodstream. Injected insulin goes straight to the bloodstream.
I've been unable to get any information on dosing (figured out in phase 1B) or the duration of insulin delivered by the Oramed capsule. I hope to get this after phase 2A is completed. It took Oramed about seven weeks to complete phase 1B, so this information may be available sometime after mid-June.
Oramed is planning to get approval first in the US and then Europe.
In addition to their oral insulin capsule, Oramed is also working to develop an insulin suppository. This product is in Phase 1 trials at present.
Update: I exchanged some e-mails with Oramed. They told me that the phase 2a trials are 'expected to last a few months'. Also that while the trials are on people with type 2 diabetes the product may be usable by people with type 1. I'll post again once I have more news.
Today I'm joining other folks with type 1 diabetes to make a little noise about it.
This used to be called juvenile diabetes because most people were diagnosed before they ended their teens. But now it's clear that you can get it at any age.
When you get type 1 diabetes, your pancreas has stopped working properly. This organ contains cells that create insulin, glucagon and other hormones. The insulin is needed so the cells of your body can process the blood sugar created whenever you eat food containing carbohydrates. Without insulin your blood sugar increases and there's no way for your body to use it.
What are the symptoms for type 1 diabetes?
Extreme thirst. This is the most obvious one. My mother described it as "wanting to drink out of the toilet bowl". Think about drinking several glasses of water and still feeling thirsty.
Lots of peeing. That's because of the water and your body trying to get rid of the sugar floating around your blood stream. Your urine is actually sweet. Mellitus (as in diabetes mellitus, the medical term for type 1 diabetes) is the Latin word for honey.
Extreme loss of weight. You've got sugar in your blood, but your body can't use it. So it breaks down its energy reserves (fat). One of the by-products of fat break is ketones. The night before I was first diagnosed with diabetes I lost over 10 pounds.
Extreme hunger. Even though you've got all this sugar in your system, your body can't digest it so you feel hungry.
Blurry vision. The density of your blood changes. This changes how your eyes focus.
Slower wound healing. Instead of clearing up in a few days a small cut or scrape can take over a week, or even longer. When I was diagnosed I had a cut on my toe that was over three weeks old. Once I started on insulin it disappeared in about five days.
Fruity breath. This is from the ketones. It tastes fruity and the smell may remind you of nail polish remover. Dentists often diagnose diabetes due to this smell or .
Itchy genitals. That sugar in your urine can cause urinary tract infections.
Fatigue. The extremely high blood sugar can cause urinary tract infections.
If you see several of these symptoms please contact your doctor. Untreated diabetes can cause coma and ultimately death. This is serious business.
These days the tools for treating diabetes are pretty good. But it still takes a lot of support and help to really manage living with diabetes. Don't try to do this alone.
If you've already got diabetes there's lots of useful places online where you learn more about taking care of yourself and your diabetes. Try the Diabetes OC for a list of diabetes blogs. TuDiabetes.com is the first of many other social networking sites for people with diabetes. There's even a weekly television program for diabetes, dLife.
I created a diabetes search tool to make it easier to find diabetes information online. I use the advertising revenue to support the research by Dr. Denise Faustman into a possible type 1 diabetes cure. To date, I've raised about $50 for this cause.
If you've already got type 1 diabetes, today is the perfect day to raise awareness. Do people at work know how to treat you if your blood sugar goes low? Can you share information about living with type 1 on your blog, or maybe an article in your local newspaper? Do your best to spread the word.
For today, I'll be using Twitter every time I do something due to my diabetes. This way others can see what I do to control it, and maybe learn more to help themselves or others.
Have a wonderful Type 1 Diabetes Awareness Day.
And why not give a hug to anyone with type 1 diabetes today?
The second part of the blogger roundtable series has been published on the JDRF site.
This time we're all talking about insulin pumps. How we first got on an insulin pump, what the challenges were, and other things about being partially bionic. It's a great read.
Thanks to Allison for putting this series together.
In other news, next Monday is Type 1 Diabetes Awareness Day
This is the day where you try to tell others a little more about type 1 diabetes and what it's like to live with it.
Beth has put together a really nice diabetes handout. Maybe you can print up some copies to hand out to folks.
If you use Twitter, maybe you'd like to tweet about diabetes for the day.
Or perhaps finally tell that friend that yes it is okay for you to eat cake or ice cream, and explain why it's none of their business.
Whatever you can do to let people learn a little more about diabetes helps us all. And that may help you.
To stop you from worrying I have not had a heart attack. Or any inkling of one.
Recently when I saw my excellent endo we had a discussion about whether I should continue to take a statin to reduce my cholesterol.
I've been taking Lipitor for about a year. I changed my use of the medicine (this may not work for you) from a 10mg pill every day to half of a 10mg pill every other day. I see a substantial reduction in my cholesterol level with this dose and I don't seem to have any of the possible side effects, thank God.
But a while ago, I read news about investigations into the benefits of taking statins. This was why I had the conversation. I was especially taken by the quote from the NY Times article.
"If a patient has had a heart attack," Dr. Afilalo said, "they generally should be on a statin."
For people who haven't had a heart attack the investigation showed there isn't as much evidence that taking statins provides a substantial benefit to enough folks to justify everyone taking it.
I was shocked by her response. "But you've already had a heart attack." For a moment I thought I was in an alternate dimension. I reminded her that I'd not actually had one. She told me that type 1 diabetes increases my risk of heart problems. Just as much as if I'd actually had one. Yikes.
Now I do really like and respect my endo. I've moved medical offices to follow her from Massachusetts to New Hampshire. But I still like to verify what I'm told, it's my natural cynical nature.
Then earlier this month I saw this news report. She was right! A recent study found that folks with diabetes (both type 1 and type 2) have double the risk for a heart attack.
So for now I'll be staying on my statin and living with yet another drug to reduce the risk of "bad things" happening in my future.
Attribution: This beautiful picture was taken by Conny. She retains all rights to the image and I'm grateful to her for letting me use it in this post.
This is the most exciting news I've had since my diagnosis with diabetes 25 years ago.
Today ClinicalTrial.gov posted a trial announcement looking for people to participate in the first trial for a possible cure for type 1 diabetes. This is based on the research led by Dr. Denise Faustman over the last decade.
To quote the site "This is the first step in trying to cure established type 1 diabetes". Tell me that's not a big thrill.
When I spoke with Dr. Faustman in January, she was hoping that they could trial this approach with relatively small numbers of people. It seems she was successful, they are looking for 25 subjects to participate in this trial. Dr. Faustman mentioned that the early trial would be used to try and establish basic dosing information and determine whether the approach actually works in people.
As usual for this type of trial there will be two groups of participants, some taking BCG and others taking saline as a placebo. You would receive an inoculation at the start and at 4 weeks into the trial. It's a double blind trial. Neither your nor the investigators will know who's receiving which substance.
BCG has been used for many years as a vaccination for tuberculosis. It's also used in immunotherapy for cancer and other diseases. It's low cost, approximately $3 for a tuberculosis vaccination. It's also not 'owned' by a specific pharma company, so it should be readily available.
I would sign up for this trial today...but I don't qualify. My age and previous inoculation with BCG exclude me. I do hope that's not always the case.
If you're thinking about it, please take a close look at both the inclusion and exclusion criteria. There are a lot of these.
I haven't written a blog post for a while due to extreme work pressures. I've had many ideas for a post, but no time to do so.
I received an invitation from David and Elizabeth Edelman of Diabetes Daily to start a blog over there. This seemed like a great opportunity, so I've accepted. For now, I'll post in both places with different articles and topics. Eventually I'll have to decide how best to handle it.
I'm extremely happy to be joining David, Elizabeth and Amylia on the Diabetes Daily team and I look forward to writing more about diabetes technology and challenges.
I see this news is being reported in severalplaces. It's interesting because there's been so much talk about using stem cells to treat diabetes. Now Novocell says that they were able to use human stem cells to control diabetes in mice.
This approach is not yet perfect because some of the mice developed tumors. I'm guessing that we won't see anything come out of these labs for several years.
Recently I put together a table for my endo. It showed how my blood glucose numbers had changed month to month since I started using the Dexcom. I was able to use the Dexcom software to get this information, based on its readings.
I wanted to show it here for a few reasons. (And apologies to anyone who is vision impaired. Blogger does a lousy job with tables, so I had to post a screen snapshot of this.) First of all, my average (Mean column) is improving most months.
My standard deviation (SD column) is also improving. Here standard deviation indicates how tight my control is. It is now more accepted that tight control may mean less complications. If I can keep my standard deviation to about one-third of my average value, then my control is tight. And I'm nearly there.
In the last column I've shown my A1C values. Again there's improvement there, but not as much as the averages would predict. A blood glucose value of 135 mg/dL should give me an A1C of about 6.0%.
This is why I believe the Dexcom readings are lower than my true blood glucose values. And I blame that on the meter it's being calibrated against. Hence my impatience for the new Dexcom model.
It still amazes me how much those of us with diabetes focus on numbers. It's not like we have a choice. We test several times a day and then do some calculation with the numbers to decide how to correct (carbs or insulin). We try to guesstimate the amount of carbs in the food we're eating and how much insulin we need to cover this. We're constantly calculating to try and be substitute pancreases.
I look forward to the day when we're no longer forced to be math geniuses.
Birdie Loo has an inspirational post on her blog Aiming for Grace about looking for an antidote.
I like the idea of offsetting all the physical pain of diabetes with something that's enjoyable. What would I like to do? Just right now, I'm stuck for ideas.
In early January I visited the Mass General Hospital research lab where Dr. Denise Faustman is leading research into a possible cure for type 1 diabetes. I was there to give a blood sample for use in this research.
If you've ever met someone you've admired for a while, or maybe a rock or movie star, then you'll know how I felt as I spent time with her.
Over the last two years I've taken part in two bike rides to raise funds for this research. But now I had a chance to actually help support the research in a more direct way.
The lab is drawing samples of blood from people with type 1 diabetes, and 'healthy' volunteers. Because they're having trouble getting healthy volunteers, they ask everyone with diabetes to bring a volunteer with them. These folks must not be directly related to you, and not have any auto-immune diseases. I was fortunate that a friend of mine from work kindly offered to come with me. Paul is one of the founders of the yard sale search site GoYarding.com.
I met Dr. Faustman early in the morning. They do all the sample collection early in the morning so it doesn't interfere with work and school schedules. While we talked, she collected four test tubes of blood from me. She explained that some of this blood was tested using machinery they're developing and some was tested manually by one of the researchers. I believe that manual testing takes about one day to complete.
They're trying to accurately measure the amount of T cells that I have. Her theory is that these T cells are responsible for destroying my insulin producing beta cells. These cells also produce amylin. This is now available as an injectable drug called Symlin that I've written about several times.
You can see a short video of Dr. Faustman and an animation of how they believe the T cell process works on the Iacocca Foundation website.
Some of the blood is also sent to another research lab. They have a method for measuring autoantibodies in blood. She explained that autoantibodies are produced when beta cells are destroyed. So if these were found in my blood, that would indicate that my body had recently lost some beta cells. Which would mean that my body is still making beta cells, 35 years after I first got diabetes.
She hopes to start trials before too long where they will be administering low doses of BCG to see if this can destroy these T cells. BCG is used in Europe as an inoculation against tuberculosis, and is also used as an immunotherapy treatment for bladder cancer.
BCG has been around for a long time. As it's already approved for use as a medical treatment, it is likely that getting approval to use this for other purposes will be quicker and easier than for a new drug. It will probably also be less expensive.
Dr. Faustman's hope was that the FDA would permit trials with low number of subjects. This makes it easier to administer the trials because getting enough people is always a challenge and testing the outcomes is easier with smaller numbers.
She explained that there will likely be several trials with increasing doses, so they can determine if it works, and at what dosage levels. Clearly having automated measurement machinery will make this process a lot faster. They've been working on developing this machinery over the last few years.
I told her that it would be wonderful if they started a blog, even a low-volume one to keep everyone informed about their progress. But she's concerned that will take away from research time and also that the blog may draw a lot of comments that would need to be read and handled.
I imagine the entire lab must feel a little like Banting and Best after insulin was first discovered. They had hundreds of parents from around the world contacting them to try and get their children treated. And that was in the days before the internet and e-mail.
It was a real pleasure spending some time with Dr. Faustman and getting an update on their progress.
I have another appointment in September to get another blood draw. As Dr. Faustman pointed out, this is an easy way to get the latest news. And by then I hope to have completed another bike ride to support her exciting research. I can't wait!
Intensive blood sugar control - dangerous in type 2 diabetes?
You may have seen the news about changes in the ACCORD Trial. This is a clinical study of adults with type 2 diabetes who are at a higher risk for cardiovascular disease.
Some of the people in the trial were following an intensive approach to managing their blood sugar. The aim was to keep their A1C results below 6%. Others in the trial were following a 'standard treatment' with a target A1C between 7% and 7.9%. This second range is much closer to what most people with type 2 diabetes achieve.
Over 10,00 people were taking part in the trial. Over about a four year period 257 people in the intensive group died, compared to 203 people in the standard treatment group. This was equivalent to 3 additional deaths per 1,000 participants per year. And both of these death rates were lower than similar populations in other studies.
About half of the additional deaths were due to cardiovascular disease, the rest were from other issues such as cancer. But it's not clear why these happened.
Because of safety concerns about this increase, the NHLBI who sponsors the trial has decided to stop using the intensive treatment approach and have all participants use the standard one with it's less demanding A1C goals.
If you want more information about the trial and what has changed, the NHLBI has an excellent FAQ page.
And remember, if you have type 1 diabetes, these findings don't apply to you. You should still aim for the best blood glucose control you can safely achieve.
Update: Kelly Close of Close Concerns has a good blog post about this trial, it's also worth reading.
The ACCORD Trial has its own web site, which gives more details about what the study was attempting to find out. From this page you can see that 5,128 people were in the intensive blood glucose control group and 5,123 people were in the standard blood glucose control group.
If you'd like to see other coverage of this situation across the diabetes internet, the diabetes search engine returns a lot of interesting hits for "ACCORD trial".
Today is the presidential primary day for many states in the US. And my good friend Manny has issued a challenge to the presidential candidates. Are they prepared to make funding for research and treatment of diabetes a National Priority.
This may not seem too important if you don't have diabetes. But remember that a recent study(PDF) showed that in 2007 the US spent over $174 billion dealing with diabets.
How much is that? More than was spent in Iraq supporting the military and dealing with situation there. Or about $580 for every person in the US, that's $2,320 for a family of four. For one year's treatment.
If you'd like to make your opinion heard on this, please complete the Diatribe survey about diabetes and its importance.
Oh, and do please vote in the primaries. It's important to make your opinion count.
The title of the interview is 'Living with (and paying for) diabetes'. When he was asked about what he's learned about the costs of living with this chronic disease, he answered
They're extensive. In some cases, some diabetics tell me the spend about $10,000 a year on this thing. You're talking about your blood glucose meter, you're talking about the test strips that are required for that (and I do as many as seven to 10 tests a day), but there are other things as well: you've got you're insulin, you've got your needles, you've got the lancets you need to poke your finger -- again 7 to 10 times a day -- and so you have a lot of fixed costs attached to a chronic disease.
He also talks about the $1 per strip cost. Maybe with his focus on publicizing the costs something may happen.
One of these days some company will wake up to the idea that they can provide accurate strips for $0.50 each and capture a big share of the market. I can't wait for that to happen.
I was reading Forbes magazine this evening and noticed a full right-page advertisement that started with this statement.
3rd Law of Healthonomics Soaring healthcare costs are only the symptoms. You've got to start treating the disease.
The remainder of the advertisement reads.
Most employers are rethinking their responses to escalating healthcare costs. Why? They recognize chronic diseases are the root problem. Example: An employee managing his diabetes might cost $5,000 per year. An employee not managing his diabetes could cost up to $45,000. The win-win here is that by providing employees incentives to lead healthier lives an helping them to manage their chronic diseases, you reduce your healthcare costs. And you'll have healthier employees. Sure beaths the alternative.
The DTCC FAQ page includes the following summary of how the DTCC works:
The Diabetes Ten City Challenge establishes a voluntary health benefit for employees, dependents and retirees with diabetes, provides incentives through waived co-pays for diabetes medications and supplies, and helps people manage their diabetes with help from a pharmacist coach in collaboration with their physicians and diabetes educators.
I like the idea of waiving co-pays for meds and supplies to help with better diabetes management. I just wonder whether this program is aimed at people with all forms of diabetes, or just those with type 2? Given that one of the sponsors is GlaxoSmithKline, I'll bet I'm right. Will is lead to better benefits for insulin pumps and continuous glucose monitors, or will the focus on cost reduction mean these important technologies are less covered?
This program is being tried by a number of employers in the following cities: Charleston/Spartanburg; Cumberland; Chicago; Colorado Springs; Dalton; Honolulu; Los Angeles; Milwaukee; Pittsburgh; and Tampa Bay.
Have you been enrolled in this program and can you give any feedback on how it works for you? I'm interested in seeing if this is the start of a new approach to diabetes care across the country. And I'd love to know whether or not it includes all types of diabetes.
Don't be put off by it's length, the real information is within the first 40 pages. It's a readable and informative document. And the Significant Barriers to Adoption that are covered starting on page 35 are still here today. It's worth reading.
If you're a regular reader, you know that I created the Diabetes Search Engine that uses Google technology to let you search over 800 sites that are all related to diabetes.
I add new sites to the engine list many times a week. And I decided that I'll occasionally post a list of the ten sites that I've most recently added. If you haven't already tried the engine out, I think you'll find it very useful. All advertising raised goes to support Dr. Faustman's research for a Type 1 diabetes cure.
I hope you'll check out some of these sites. I had a hard time stopping at the first ten!
InsulIndependence.org is "a worldwide project aimed at changing diabetic lives through adventure travel, educational outreach, and web-based community support."
so much sweeter is a fairly new blog from Carly. She's a graphic designer from PA, and she's the proud wearer of an OmniPod.
The Biggs Picture is a blog from Angela. Like many oph us she struggles with diabetes and technology. She seems to like kitties.
D.A.D. Innovations is a startup company that makes and sells diabetic driver car window decals and other handy products. The company was founded by Lisa, who's dad has diabetes.
Trying To Be Human is a blog from Araby62. "Various and sundry thoughts on living with type 1 diabetes from a thirtysomething wife, daughter, sister, aunt, friend, and lady-in-waiting to a certain feline."
Dodging Diabetes Charity Dodgeball Tournament. I think the name is obvious. This is the 3rd annual one and it happens in Bethesda, Maryland. They're looking for participants and sponsors.
The Diabetic Runner Challenge is a site that challenges you to run and raise awareness of diabetes and the upcoming 2nd World Diabetes Day in November.
Camp Possibilities is a camp for "children with diabetes between the ages of 7 and 15 who, due to the complexity of their disease, often do not get the chance to go to a summer camp". It's in Darlington, MD.
If I don't talk with you before then, have a great weekend!
I recently realized that I'm paying sales tax to the Commonwealth of Massachusetts for each box of Dexcom supplies that I purchase. The sales tax is not reimbursable, so if I order 10 boxes a year for a total of $2,400 I will support our glorious Commonwealth to the tune of $120.
I'm starting to raise some issues about this with my local reps and the tax office here in Massachusetts, or Taxachusetts as some of us fortunate enough to live here will call it.
So I thought I should gather some information from my readers. If you live in the US and you've purchased either Dexcom sensors or blood glucose strips please let me know the following.
Note: This is for non-prescription items. Massachusetts has different rules for test strips if I get them on prescription, versus if I buy them over the counter. So please let me know if you're purchased these items without a prescription.
I know that I've been very quite on the blogosphere for the last several weeks. I appreciate more than I can express all the comments and e-mails asking me how I'm doing and wishing me the best.
I won't bore you with the details here except to say that I'm in the middle of some type of depression. It's not earth-shattering and for those of you who have diabetes, it's probably not entirely unexpected. Taking care of a chronic disease is a big burden and it takes its toll. The good news is that I'm working pro actively to get this under control and get through it. And in the meantime I'm focusing on essential activities because I've not got a whole lot of energy for other things.
It's been a busy year on the blogosphere and busy one for me. I've been blessed with a lot of accomplishments over the last year, in no particular order:
I met Allison and Mel in Boston. It's always fun to get together with fellow diabetics! If you're going to be near Boston in 2008, please let me know.
I got to some meetings of the insulin pumpers group that meets in Woburn, MA each month. A fun, supportive and informative group. Every state should have a group like this.
I marked my 35th year with diabetes by raising over $11,500 for research in a diabetes bike ride. Hint: it's not too late to support this.
I received an award from Lilly and Joslin for 25 years with diabetes. Thanks Dr. Spatola for organizing this one.
I setup the diabetes search engine. It now indexes over 800 sites and I like to think that it's helpful for folks.
I joined the great TuDiabetes.com social networking site for diabetes. Big kudos to Manny for starting this.
I worked together with Beth to start the diabetes365 project (originally her idea). As of today there are about 1,750 photos that give some insight into what it's like to live with diabetes.
I almost completed NaBloPoMo for this year. I didn't post for every day of November. Next year will be better.
I started using the Dexcom STS continuous glucose monitoring system and moved to the Dexcom SEVEN system later in the year. Life with a CGM is a lot easier, though it still has its frustrations.
And of course I posted many blog entries. Along the way I hope that I informed some readers. I know that I learned a lot from your comments and I also managed to get lots of practice with my writing skills.
So what's in the cards for 2008?
I'm getting some blood drawn in January as part of the research for Dr. Faustman's work on a possible cure for Type 1 diabetes. No, I'm not getting an early version of the cure, I'm just donating blood samples for the work. I hope to meet her and ask a few questions, I'll let you all know what I learn.
I'll keep blogging, though maybe a little less.
I hope to get involved in another fund-raising bike ride in September.
It's been a tough week for me. And I don't really understand why.
Maybe it stems from my A1C at the end of October. In July my A1C had plummeted to 7.0 from 8.4 in April. So I was really looking forward to an even better number.
Running the stats from my Dexcom, I expected at least a small improvement. Especially because I'd been working really hard at improving my diet, adding more exercise. For maybe the first time ever I was starting to think that I had wrestled my diabetes to the ground and won.
Then I got my end of October result.
8.1
What's going on? This number just didn't feel right.
Since then I've had two further A1C tests. One by means of Kevin's excellent A1C-by-mail, HomeCheck A1C, which gave me a result of 7.6 in mid-November. Another at my doctor's office a week later that gave me an A1C of 7.4.
This is one of the great frustrations of diabetes. I'm using a lot of diabetes technology:
And with all of this, I can't seem to get my A1C levels down to a lower level. That's really frustrating.
But I notice that my life seems very flat. Colorless.
Yes, I'm still blogging, and still taking daily photos for the Diabetes365 Project. For the most part I'm taking care of myself.
Recently this has gotten a lot harder. Maybe it's the same kind of issue that Allison is struggling with, but I don't think so.
Perhaps it's some type of low-level depression, which I know often accompanies diabetes. This disease is so wearing, it's a wonder that more of us aren't depressed.
Whatever it is, I just wish it would stop.
If you've got any suggestions, do please let me know.
I was having a conversation with a buddy at work today about the A1C test. We started with A1C and ended up talking about many aspects of diabetes.
Afterwards I was thinking about all the stuff that I know about Type 1 diabetes. Sometimes the amount of things that I carry around all day is scary in a geeky kind of way.
Remember that I'm not a medical doctor.
I know that:
insulin lowers my blood glucose levels.
ideally my blood glucose (BG) level should be about 100 mg/dL.
there are lots of different blood glucose meters out there. None of them are truly accurate.
eating food with any carbohydrates raises my BG.
but I can eat almost anything I want, including candies, cakes, and ice cream, as long as I do it in moderation.
stress, or illness, also raise my BG. Sometimes a lot.
some medicines that I take when I'm sick raise my BG.
exercise is a great way to reduce my BG.
but too much exercise can cause me to have a low BG (less than 80 mg/dL).
then I have to eat more. But not too much more.
when travelling I need to pack a lot of stuff so I can take care of my diabetes.
there are several types of diabetes. And many people get confused about them.
because of diabetes my cholesterol level needs to be kept much lower.
my risk of have eye damage is significantly increased.
there's a lot of diabetes technology out there, but
there's no cure for diabetes.
when my BG is not 'normal' I can feel: sad, tired, angry, lousy, argumentative. I'm not myself.
I need to check my BG level before I drive. Every time.
I need to have my eyes checked at least once a year. Out of control diabetes is a leading cause of eye problems.
I'm at increased risk for gum disease, so I need to see a dental hygienist at least twice a year. Ideally every quarter/
I need to wear something on my feet at all times, because diabetes can cause foot problems.
diabetes (all types) are the cause of a lot of complications. And I worry more than I should about getting one of these.
I can now inject myself many times a day. Before I was 15 I would not have thought this possible.
if I do the same things every day I will not get the same BG levels. Sometimes these things just change randomly.
Those of us living with diabetes already know how much it impacts our lives.
Too many times each and every day we have to pause in what we're doing to make some allowance for diabetes. And this is just as true when we're being romantic with a loved one.
The Well blog on the New York Times site has a post today about a new book, Sex and Diabetes, that examines how diabetes affects our romantic lives and gives various strategies for dealing with it.
Not a huge number, a la Martha Stewart. But something between 4 and 6 depending on whether some have been taken by critters, or just passed on.
Early the other morning as I went get something from the garage I spotted the chickens already out for the day. It was bitterly cold, so their feathers are all fluffed up for extra insulation. And it was too dark to start picking around for food.
Yet they're still out there, instead of being a little warmer inside the enclosed part of our home-made coop.
If you're wondering why, then you clearly don't know chickens.
In the five years since we started keeping chickens I've learned a lot about them, and a little more about myself. Chickens are just plain stupid. They can't figure out even the simplest of things.
Thankfully we don't keep them for their brains. Initially we wanted them for their eggs and to teach the children about where some of their food comes from.
But over time I've learned that chickens are just a delight to have. They don't need much care and feeding. They'll eat table scraps, so we're not throwing out as much food.
And they make me laugh. Big belly laughs when I watch them run around the yard.
So in a way having chickens is also good for my diabetes. Because anything that gives you healthy fresh eggs and makes you laugh can't possibly be bad for you.
Oh, and they've also trained me very well. If I look at the coop and the chickens see me, they crowd at the door. Most of the time this is enough to get me to go out there and feed them some cracked corn.
According to the International Diabetes Federation, diabetes is the fifth leading cause of death worldwide, it's expected to cause 3.7 million deaths this year alone.
Maybe you know someone who has diabetes, why not call or contact them in honor of today and learn a little more about what this disease is all about?
Most people with diabetes have Type 2, and often the symptoms are not recognized in time to stop complications from damaging their body. Do you know the symptoms of diabetes?
And if you'd like to know a little about what it's like to live with diabetes, check out some of the pictures from the diabetes365 project. They'll give you a glimpse into how diabetes impacts our lives.
Richard Kahn of the ADA recently gave a speech where he seemed to be against the technology that I depend on every day to keep me alive and well. Amy Tenderich and others have blogged about his comments.
I'm not saying much on the topic because his speech(PDF) makes me so mad. It strikes me that he has a lot of nerve for someone who doesn't seem to have diabetes and therefore doesn't need these devices to maintain his health or quality of life.
Here's where I stand on this.
I wear and use several diabetes devices that have really given me my life back.
The first of these was my blood glucose meter. Before I had one of these I used urine testing. I called this the "closing the stable after the horse had bolted" test. Because all it told me was a value after my blood glucose was high enough to spill into my urine. So the test might say I was 'negative', but my blood glucose could have been 190 mg/dl. And the thing was stinky and a pain to use.
About nine years ago I started using an insulin pump. Before that I was on multiple daily injections. On a good day I only had about 6 injections. On a bad day, 9 shots or more. My blood sugar control was pretty lousy. And before the pump I really couldn't exercise because it's impossible to undo an insulin injection.
In the last year I got a continuous glucose monitor. This has freed me from a lot of worry. No nighttime lows without a warning. Long distance driving? No problem.
Life is a lot easier with all of these. But they do have challenges.
It's extra stuff to carry, to program, and to download information from. The cables alone are a pain. And when the pump and CGMS alarm multiple times in the middle of the night, I want to throw them away.
But you'd have to pry them from my cold dead hands before I'd give them up.
World Diabetes Day only a few days away. And I think this is the high point of National Diabetes Month for me.
You've possibly seen these links on other blogs, but just in case.
Allison of Lemonade Life has opened the voting for 3rd Annual Diabetes O.C. Awards. So get over there and vote for your favorite diabetes blogs and resources. Read's Allison's blog post for more details.
Manny of TuDiabetes fame has posted the video that was created from the submissions for the word in your hand project. It's a thoughtful video that helps people understand what it's like to live with diabetes, and it's worth watching.
It's produced so that it contains less digestible carbohydrates, so you don't need as much insulin when eating it. Here's what they say on their website.
Dreamfields Pasta has largely the same level of durum semolina as traditional pastas, with a low level of our unique blend of fibers and proteins and no soy fillers. The Dreamfields approach means fewer carbohydrates get digested that will increase blood glucose response. So you get the authentic taste and texture you expect from pasta, but with only 5 grams of digestible carbs. Dreamfields also contains twice the fiber of regular pasta, including a special fiber called Inulin that has been shown scientifically to promote digestive health and support a healthy immune system, while enhancing calcium absorption for strong bones and teeth.
I spotted a box in my local supermarket. First thought, it's expensive - about 4 times as much as box of similar regular pasta. So when we next had pasta at home, I just cooked myself one portion of Dreamfields. It tasted pretty good and definitely gave me a smaller spike. So I'll be using it sparingly in the future in place of regular pasta.
I'm in bed as I type, courtesy of some bug that's been floating around the family and the office.
Despite diabetes I'm usually fairly healthy, but diabetes means my immune system doesn't work as well as it should. My blood sugars have been high all day, and wouldn't go down even with extra insulin. That gave me a chance to think about how I felt, and I had to admit to having caught something. Oh well, hopefully I'll be back on my feet before the weekend is out.
So here are a few links for Friday. I hope everyone has a wonderful Veteran's Day weekend. Keep our military men and women in your prayers, they need our support.
Today is D-blog day. If you're new to the blogosphere, you'll find lots of great bloggers writing about diabetes-related issues.
I've mentioned the diabetes search engine before. Right now it uses Google technology to search over 750 sites for information about diabetes. I'm probably adding around 20 sites a week to the engine so hopefully it's getting more useful over time. And the money that's raised by advertising revenue goes to diabetes research causes. Please try it out and let me know what you think. If you know of a good diabetes site that's not in there let know about that too.
Recently I found the SafeSittings web site. (The owner is a member of TuDiabetes.) What do they do?
SAFESITTINGS is a nationwide website that makes available teens with Type 1 diabetes as babysitters for children with diabetes. These teens have been managing their own care for many years. They understand the dangerous highs ands lows inherent in the disease and have the skills to test blood sugars, give insulin injections, adjust insulin pumps and treat hypoglycemia.
I imagine that for parents of children with diabetes, this might be a great service. And for teens with diabetes, it might be way to earn useful babysitting money and feel good about helping out a family. What a great concept!
I've been reading the Wall Street Journal Health Blog a lot. Good short articles about health-related issues. One of the rece
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