Miscellany

Laddie_Head SquareToday’s post is a bullet point view of a few things that are relevant to my life these days.

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  • I seem to be able to relate almost everything in my life to diabetes. A few weeks ago I was playing golf and needed to know the distance to the pin so that I could select the proper club. I used my laser range finder which measures the exact distance to the hole by zeroing in on a crystal receptor on the flagstick. Someone asked me what the distance was and I confidently answered 161 yards. One of my playing companions had also taken a measurement and indicated that her device read 125 yards. I took another reading and also measured in the 120’s. Had I use the erroneous reading and hit a good shot, my golf ball would have gone into the desert past the green and resulted in a double or triple bogey. My immediate thought was that this was just like a blood test with diabetes. If my meter gives an erroneous reading, I over- or under-dose my insulin and end up with an unexpected and undeserved high or low BG reading.Golf Desert
  • I write most of my blogposts on my iPad and find that I make the same typing mistakes and get the same crazy autocorrects over and over again.  My pinkie finger must not reach far enough for the “a”, so my most common mistake is to type “disbetes” instead of “diabetes”. Although I get a red line under disbetes, it does not autocorrect to diabetes. Some people would love to change the name of Type 1 diabetes, but I don’t think “disbetes” will have many supporters. A second mistake I often make with diabetes-centric writing is to write “lower card eating” instead of “lower carb eating”. One would think that I have an Ace of Spades on my plate instead of a piece of turkey. An email to Sue from New York after her sleep consultation ended up with two mentions of her “creep” consultation.  Good thing I corrected those mistakes before sending the email although Sue did think the sleep study was somewhat creepy.                                                                             Plate Turkey
  • Autocorrects also sabotage my writing.  “Bolusing” is often rejected by my iPad which insists on  a substitution of “blousing”. The statement that I bloused 3 units of Novolog with my lunch is somewhat nonsensical. This is the third blogpost in a row where I have mentioned the podiatrist/author Neil Scheffler. The rejection of “Scheffler” for “Scheduler” brings to mind James Bond and Batman villains.  Holy Guacamole, Batman, stay away from the The Scheduler!                                            The Scheduler
  • Olympics Trivia.  Late in January Abby the Black Lab’s sister was on the NBC Nightly News with Brian Williams in a feature about the threat of terrorism at the Sochi Olympics. Because black labs don’t have an aggressive bone in their bodies, that statement warrants an explanation. Abby’s littermate, Jackie, belongs to a Minnesota friend who is going to Sochi to watch her daughter compete in one of the skiing events. My friend was interviewed at her home about whether the terrorism threat was waylaying her family’s plans (it’s not) and the beginning of the clip showed Jackie bouncing and jumping up. “Not very good behavior” thought Abby who is jealous of her sister’s celebrity status.                                                                                                  Abby and Jackie Sister2                                                 
  • Super Bowl Trivia. Pete Carroll, coach of the Seattle Seahawks, lived down the street from us when he was a Defensive Backs Coach for the Minnesota Vikings in the late 80’s. His two oldest children are the same age as my boys and they went to school together. Extremely nice family and congratulations to Pete and the Seahawks for a job well done.                                                                                    Seahawks
  • My Arizona podiatrist is now my new best friend because the cortisone shot on Tuesday has returned my heel to A+ status. Hopefully this injury will not return.                                                                                                                                         Call the Podiatrist_2

That’s it for today, my friends.

Jinxed Again!

 Laddie_Head SquareA while back I wrote a post about how I jinx myself when I think things are going well. The mere hint of positive vibes is enough to send my life into a downward spiral. In late January I wrote a post reviewing the book Things You Need to Know About Diabetes and Your Feet by Neil M. Scheffler, DPM, FACFAS. I talked about the importance of foot care along with mentioning (or was it boasting?) that I had no foot problems and had never seen a podiatrist.

Fast forward to two days after that post. I was walking with a friend and out of nowhere started having pain in the back of my right heel. Nothing popped; nothing twisted; it just started hurting. I finished my walk and figured that the pain was minor and would go away. I hobbled around for a few days and continued with most of my regular activities. I iced the foot often and used a topical gel for pain relief. Once or twice when it was really painful, I took a couple of ibuprofen tabs. That is a big no-no for me because I am already on a prescription NSAID for my arthritis. The ibuprofen really helped, but it is safely back in the medicine cabinet. If the pain is so bad that I feel I need it, I should be talking to my doctor and not abusing prescription or over-the-counter medications.

The pain continued to get worse and my next step was to quit all activities except for sitting on the couch and icing the heel regularly.  Every so often it seemed as though it was better, but a walk across the room quickly dissuaded me of that notion.

I think that you can guess where this story is going. Suffice it to say that she who had never seen a podiatrist before has now seen a podiatrist.

Call the Podiatrist

Tuesday I went to a foot doctor recommended by a friend and had the heel checked out. Fortunately x-rays ruled out anything like bones spurs and he believes that it is an inflamed nerve. He injected the heel with an anesthetic steroid concoction and I am supposed to go back in two weeks.

The doctor seemed very knowledgeable about my feet. Because of my diabetes he did an extensive visual inspection and checked for pulses and sensation. After asking how long I had had diabetes, he did a little math in his head, and questioned how I could have Type 1 (Juvenile Diabetes) because I had been diagnosed as an adult.  Argh!  Very nicely I indicated that Type 1 is the result of an autoimmune attack and age of diagnosis has nothing to do with it. End of conversation.

In all of my years with diabetes, this is the first time that I have ever had a steroid injection. I was expecting a huge jump in my blood sugars, but so far the effect has been minor. Initially I used a temporary basal of 130-150% which was similar to what I had used for couch camping.  Yesterday I started to go low and returned my basals to normal. Overnight I started to run somewhat high and I have upped my basals again with a few correction boluses. So far the pain relief from the injection has been worth any disruptions in blood sugar.

The first afternoon after the injection was nirvana because the anesthetic was still active and I had no pain. Two days later I can walk normally and that’s a huge improvement. I am still taking it easy and will continue to ice the foot. Abby the Black Lab was thrilled to get a walk around the block yesterday after two weeks of home confinement. I checked with Dr. Google and he/she/it indicated that it usually takes a few days for a steroid injection to take effect and I am optimistic that I will continue to improve.

Have I learned anything from this?  Absolutely YES! I think that I have learned to keep my mouth shut. I now realize that blogging is a threat to my health and I should take up a less risky hobby such as sky-diving. When it comes to reviewing books about feet, I’m going to stick to The Foot Book by Dr. Seuss:

Left foot, left foot,

right foot, right

Feet in the morning

feet at night

And that’s all I have to say on the subject.

Spare a Rose

Laddie_Head SquareThe Diabetes Online Community has come together again in 2014 to sponsor the Spare a Rose, Save a Child campaign.  The message is simple, but powerful.  Buy one less rose this Valentine’s Day and donate that $5 to the Life for a Child program sponsored by the International Diabetes Federation (IDF).  Your gift of $5 will provide a month of insulin and diabetes supplies for a child in parts of the world where these life-saving medications and supplies are desperately needed.  Or consider donating the equivalent of a dozen roses and giving a year of life to a child with diabetes.

728x90tag_Spare a RoseThe website for Spare a Rose, Save a Child was created by members of the DOC as a source of information about the Spare a Rose program.  If you are a blogger, you can find links and images at this site to use to spread the important message about this campaign.  This one-page information sheet will tell you everything you need to become involved.

If you wish to donate, use this donation form to send your gift directly to the IDF using PayPal.  Please note the down arrow that gives you choices of how much to donate.  (Spare 1 Rose = $5 = 1 month of Life for a Child. 2 Roses = 2 Months and other options up to 2 dozen roses for 2 years of life for a child.)

As we approach Valentine’s Day 2014, let us all be generous in sharing our bounty with children all over the world.  To us, a rose is small.  To a child with diabetes, that rose represents another day, another month, another year of life.

To donate, click on this image.

To donate, click on this image.

Feet

A few weeks ago on Twitter, I saw a request from the Book Department of the American Diabetes Association for bloggers who might be interested in reading and reviewing books. As someone who enjoys reading and is always looking for blog topics, I jumped at the opportunity.  Rather than being assigned a book, I was able to select the book(s) I wanted to review.  I decided that I would opt for books that were a bit outside my comfort zone: books that rightly or wrongly I might not normally read.  The books that I chose were provided to me free-of-charge, but my reviews, as always, are my own opinions.

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Laddie_Head SquareMy first selection was a short book by Neil M. Scheffler, DPM, FACFAS titled 21 Things You Need to Know About Diabetes and Your Feet.

Why did I pick this book?  I chose it because I currently have no issues with my feet related to diabetes and I usually skip the chapter on foot care when reading diabetes books. By selecting this book, I wanted to force myself to read and learn everything that the podiatrist author deemed important. I also wanted to compare his recommendations to what is happening with my care team, my feet, and my diabetes.

The Book

Dr. Scheffler has written a concise guide to just about everything you need to know about having healthy feet and about the specific risks that those of us with diabetes face. Like every other discussion about diabetes and feet, he spells out the grim statistics on the first page and doesn’t take long to start talking about amputations. Fortunately he very quickly moves on to the good news as stated by the Center for 3D 21 Things-Feet_CroppedDisease Control (CDC) that “comprehensive foot care programs, i.e., those that include risk assessment, foot-care education, and preventive therapy, treatment of foot problems, and referral to specialists, can reduce amputation rates by 45% to 85%.”

The “21 Things” referred to in the title are the 21 chapters of the book. Topics include the Diabetes Foot Care Team, Diabetic Neuropathy, Foot Ulcers, Shoes and Socks, and Emergencies. One thing that I particularly appreciated was the discussion that foot care requirements are not the same for everyone.  Kind of a YDFMV (Your Diabetic Foot May Vary) attitude. (Thanks, Bennet of YDMV.)   Although the author states that everyone should check their feet daily, he is quick to concede that a recently diagnosed Type 1 in her twenties probably does not have the same needs as someone who is a senior citizen with 20 years of diabetes and numbness in his feet.

My Feet

So how do I measure up with the care of my feet which have carried me through 37 years of Type 1 Diabetes?

I’ll tell you the bad stuff first. By the third paragraph of Chapter 2, I’m already looking at a failing grade. Rather than an annual exam with a foot specialist, I have never seen a podiatrist in my life except for a free 5-minute exam at the ADA Expo in October. I wear sandals and thonged flip-flops frequently.  Last year I didn’t go to the doctor for a bloody toe from an extended downhill climb in wet hiking boots. My endocrinologist does not check my feet.

Before you take me into custody for a foot intervention, let me explain myself.  My feet have always been in good shape and the last time my endo saw them, she stated that she wished all of her patients had feet as well-cared for as mine. Although many endocrinologists check feet at every visit, the ADA Standards of Care only require an annual comprehensive foot exam that includes checking for pulses and sensation as well as a visual screening. For me that exam is performed at my annual physical by my internist and my endo questions me to ensure that it has been done.

I am fortunate to have no numbness in my feet.  I can feel the tiniest grain of sand and quickly respond to shoes or socks causing irritation. I use moisturizing foot creams daily to prevent painful heel cracks. My flip-flops are thick-soled with good arch support and I only wear them at home (okay, also at the beach).  I wear high-quality socks such as Thorlo and Smart Wool. When hiking I often put on dry socks at lunchtime and always wear gel protectors (they’re like toe socks) on my second toes to prevent the kind of injury I had last year.  I am still agile enough to inspect my feet and clip my nails.

Believe me, I take foot care very seriously even though I don’t follow every rule. I accompanied my father-in-law to many podiatrist appointments for wound care of foot ulcers resulting from Type 2 diabetes and congestive heart failure. One of my friend’s husband with diabetes had a leg amputated a few years ago. I have heard Kelly’s story of her continuing battle to save her foot as she fights various tissue and bone infections. There are others in the DOC who struggle with balance and numbness in their feet.

Two Feet

I’m not stupid. This is serious stuff. Although Dr. Scheffler would wish that I saw a podiatrist, I think that he would approve of how I care for my feet, work on achieving good blood sugars, and very importantly, don’t smoke.

I am getting older and have had diabetes for a long time. Just because I have never had a podiatrist appointment in the past doesn’t mean that I never will in the future. In fact I probably will.  And like everything with diabetes, what I do is not necessarily what you should do. Follow your good sense, the advice of your medical team, and take care of your feet.

If you would like to purchase this book or any other books in the American Diabetes Association Store, please go to this link:  http://www.shopdiabetes.org/

Blogs, Blogs, and More Blogs

Laddie_Head SquareI have followed blogs about diabetes for years. In the early days it was a matter of going to Kerri’s or Scott’s blog and following the links to other blogs listed in their Favorites list. Or maybe those weren’t just their favorite blogs; they might have been the only other diabetes blogs out there.

Finding a new blog wasn’t just a 5-minute diversion of reading a single post. It was an adventure where I would read the entire blog from start to finish.  Or sometimes I went backwards from finish to start. In the early days I think I enjoyed the stories more than I actually felt a kinship with the authors. They all seemed to be much younger than I was.  Many seemed to be struggling more than I was. My diabetes was not perfect by any means, but no one was pressuring me to change anything. I didn’t know that I was alone with my Type 1 diabetes because it had never dawned on me that I would ever meet someone else in my situation. I didn’t know enough to realize how much diabetes support and fellowship would eventually enrich my life.

Fast forward to the present. I “know” a lot of people with diabetes through social media platforms such as online forums, Twitter, Facebook, and the blogosphere. I really “know” some of these people because I have also met them in person. I used to wonder what I would have done the last 37 years with all of the time I spent dealing with my diabetes – lows, injections, testing, doctor’s appointments. Now I really wonder what I would have done with that time added to the huge amount of time I spend online as a member of the DOC.

After several months of wavering and building up my courage, I started my own blog in late May. In general it has been a rewarding experience and I am proud of what I have accomplished. At the same time I have no idea how long I will keep doing this. George at Ninjabetic just celebrated his eighth Blogaversary. Will I still be blogging in 8 years?  I think it’s a safe bet that I will not.  I expect to be here next week and next month. And hopefully next year. Will I eventually reach the point where I have said it all and my motivation has flown the coop? I assume so.

November was National Diabetes Month and many bloggers upped their game all month with daily posts, photos, and advocacy projects. My Feedly Reader had at least 50% more posts to read daily than in previous months. I have a lot of diabetes blogs in my Blogs and More BlogsFeedly feed. In fact, I follow 63 blogs. If you’re in my Blogroll, I follow you. If you’re not in my Blogroll and want to be, please contact me and I’ll add you. And I will read your posts.

On one hand, November was exhilarating. On the other hand, the views of my blogposts went downhill. I think everyone was too busy writing posts to read other posts! Scott Johnson continually reminds me that stats don’t matter and that I should be writing for other reasons than validation by others. I don’t lose sleep over blog statistics, but I still enjoy seeing certain posts get a lot of reads. Believe me I am still humble. How can I not be when the most viewed and powerful post on my blog was written by Sue from PA, one of my blog contributors, and two of my dog’s posts are holding down 6th and 7th place in all-time views?

Using a reader app helps me keep up with a lot of blogs because it only lists new posts. There are some disadvantages also. By always following the links of individual posts, I miss the overall experience of visiting and exploring an entire blog. It’s also a little more difficult to write comments because Feedly has a bad habit of losing comments that I make. Therefore I tend to reopen the blog in Safari to write a comment. That can get very time-consuming. The only time I have problems keeping up with so many blogs is when someone writes a post with a lot of links to other posts.  Fridays can be a bit daunting because of Friday Finds compiled by Allison at With Faith And Grace. This is her non-diabetes-centric blog and the links she provides on Fridays are fascinating, motivating, funny, and a tool that along with my iPhone 5 helps me remain “relevant” and “hip”.

Every so often  I think I should reduce the number of blogs I read just as some people have started to cull their Facebook friends list. Someday I should seriously consider that. But I’m not going to do it today. Or tomorrow. Or the next day. Keep on writing, my friends, and I’ll keep on reading!

Short Hikes-Hiking with Diabetes Part 3

Laddie_Head SquareMy 2013/14 Arizona hiking season is underway with three long treks and multiple short hikes under my belt.  I have been extremely pleased with how strong I feel and how confident I am in handling my diabetes.

In late July I wrote my first blogpost about hiking and discussed the possibility of hypoglycemia while out on the trail and the necessity of carrying a Glucagon kit. My second hiking post in August discussed my personal rules for being safe in the outdoors and how I’ve learned to balance acceptable blood glucose numbers with safety and a passion for the beautiful Arizona landscape.

In this post I plan to talk about how I prepare for short and easy hikes. I’ll discuss specifics of what supplies I carry, how I eat, and how I adjust my insulin. Although these short hikes are easier to manage than some of the crazy-long difficult hikes I do with my Friday hiking group, it is still important to plan and make decisions that keep me safe.

I categorize easy hikes as 3-5 miles in distance with some elevation changes, but not the think-you’re-gonna-puke climbs that are ubiquitous in Arizona. Because I walk my dog 3 miles every morning, is there a difference between a walk and a hike?  Probably not, except that I call it a walk on neighborhood streets and a hike when I’m in the desert.

Supplies I Carry:

I never walk my dog without a full tube of glucose tabs (40g carb) in my pocket and I always carry my phone. I don’t take water because neither Abby the Black Lab nor I mind waiting until we get home to drink. I also don’t carry ID beyond what is on my medical alert bracelet (Name, Type 1 Diabetes, Insulin Dependent, ICE with my husband’s cell phone number). Maybe I should, but I don’t.

McDowell Views_RI am extremely lucky to live a few blocks from the McDowell Mountain Regional Park, an Arizona gem of 21,000 acres of desert beauty with hiking trails, bike trails, and campgrounds. There are mountains to climb and multiple flat easy walking paths. The views are fantastic. If I walk from home to explore this area, I carry a bottle of water in addition to glucose tabs and my phone. I don’t know exactly why I add the bottle of water except that it is a sensible rule to never go into the desert without water. I also carry a photo ID along with my required park pass.

If I am hiking farther from home, I take a fanny pack that holds two bottles of water, a pack of granola bars, some fruit gummies, and of course my glucose tabs, phone, and photo ID. I also take my BG meter which I never do when I’m just walking/hiking from home.  Although I’m willing to trust my Dexcom for an hour or two near home, I want back-up for driving and for longer periods of time.

Hiking Supply Chart_REVBreakfast Bolus:

The vast majority of my hikes and walks take place in the morning and breakfast is the meal I need to be concerned about. What is working for me right now is to limit carbs so that I don’t have to worry much about active insulin. At the same time I must have some carbs or my BG will go up with post-dawn phenomenon or whatever you want to call it.  My current breakfast of choice is plain Greek yogurt mixed with berries or apple pieces for a total of about 15 carbs.

Temporary Basals:

Because I have the luxury of being able to walk/hike after breakfast almost every day, my basal rates have exercise built into them. If I don’t exercise, I usually need to use a temporary basal to up my rates through the morning. If I’m a bit low before starting to hike, I often munch on 1 or 2 glucose tabs and then use a temporary basal of zero for 30 minutes. It’s just like proactively using the Medtronic Threshold Suspend!

Summary:

I think I’ve outlined just about everything I do in preparation for short and easy hikes. Because each of us is different in our fitness level, insulin requirements, and goals, what I do is not necessarily what you should do. But you should think about everything that I mentioned.  Maybe you like to carry your BG meter on short neighborhood walks. Great, then do it. Or possibly you need to start a temporary basal two hours ahead of exercise. Then set an alarm so you remember to dial back the insulin.  If a walk of one-half mile is a challenge for you, it doesn’t matter. Get out there and be proud of what you can accomplish.

The only “musts” that I prescribe are to always carry fast-acting glucose and to always wear some sort of medical ID. Glucose tabs, gel, or whatever. Choose what works for you and don’t leave home without it. There are lots of nice medical ID’s out there and find one that you are willing to wear 24/7/365 for the rest of your life or until there is a cure.

And if you are taking your dog with you, don’t forget the poop bags:-)

Oh What a Night!

Sue May 2013_Head SquareNo, I’m not referring to the popular song by The Four Seasons. I’m referring to last night.

After dinner I checked my blood sugar, got a reading of 246, and dosed 5 units of Apidra on my pump, which is what I normally dose for a 250 reading. I went to bed around 9, and woke up to four loud beeps and a reading of 50 on my Dexcom around 12:30 am. I ate two glucose tablets and went back to sleep. Around 1:15 am my Dexcom beeped four times again, and after doing a finger stick and getting a reading of 54, I once again ate two glucose tablets and a small box of raisins and went back to sleep. Another hour passed, another four beeps, and this time the Dexcom read 40. What on earth was going on? This time I drank a small box of juice, and once again returned to sleep. After another hour I got the four beeps again. I got up and swallowed a tablespoon of maple syrup, the old standby my husband always used when I was comatose from a low. When I woke at 7:30 this morning, my fingerstick showed a reading of 83. So overnight I consumed approximately 55g of carbs, and still only woke with a blood sugar of 83!

BG Numbers off a Cliff

Now before I got the Dexcom, I wouldn’t have been awakened four times in one night. My husband would have been awakened by me convulsing. He would have then proceeded to force feed me tablespoons of maple syrup and then wait patiently for me to wake up. This used to happen to me several times a year. It has only happened once in the four years that I’ve been using the Dexcom.

At the present time, Medicare doesn’t approve the use of a continuous glucose monitor. I will be on Medicare in a year and a half. At that time, I anticipate that like Sue from Pennsylvania’s husband, my Dexcom will be a thing of the past. Sue’s husband had a telephone hearing last summer with the Medicare administrative law judge, and he is still awaiting the decision.

As Sue stated in her December 26th post titled The Crusade Continues, there is a bill being introduced to Congress, H.R. 3710: Medicare CGM Coverage Act – to amend title XVIII of the Social Security Act to provide for coverage of continuous glucose monitoring systems (CGMS) as durable medical equipment under Medicare, and for other purposes. In my opinion, after young children, seniors are the ones who most need CGMs. I pray that this bill gets signed into law, and this age discrimination by our government becomes a thing of the past.

What is Good Enough?

Laddie_Head SquareWhen I was diagnosed with Type 1 Diabetes in 1976, there were no home blood glucose monitors and I didn’t start my diabetes career with target ranges or numbers. I knew that too many dark brown 4+ readings on my Keto-Diastix urine strips weren’t the best, especially if they were accompanied by dark purple results on the ketone pad. I quickly learned that I shouldn’t delay meals or skip snacks because of the risk of sweaty, shaky, numb-lip lows. Other than that, my job was to follow my 1800-calorie exchange diet, take my insulin once a day, and carry Lifesavers candy in my purse. Victory was defined as staying out of the emergency room with either DKA or hypoglycemia.

In general I did what I was told and managed to lead a mostly normal life. Even as meters and A1c tests arrived in the mid-1980’s, I was subjected to very little pressure to “do better”. I have a notebook full of letters from my endocrinologist with the comments “Great job. Keep up the good work!” next to an A1c of 7.8.  I will admit that once it got above 8.0, I usually got the suggestion of “Let’s try for a little lower next time.”  Improvements in my A1c accompanied the advent of newer insulins and technology and my participation in the DOC.  Even as targets for good control were lowered through the years, I continued to meet or exceed them and bask in my model “compliant” patient role.

Along the way, I’ve occasionally stopped and wondered if what I am doing makes a difference and questioned whether my quality of life might be better if I loosened my targets and relaxed a bit. Like most people with Type 1, I can’t begin to guess how many lows I’ve had in my life.  Fortunately few of them have required outside help or even paramedics, but there is no doubt that they have ruined a good round of golf, embarrassed me in front of friends and customers at work, and scared my poor husband to death.

Except when I have an absolute lack of insulin from a pump problem, I feel really good when I’m high.  I’m not talking days and days of +300 readings; I’m talking a few hours of 180-280 after meals or just for no reason at all. When I worked, if I felt really good and energetic late in the afternoon, I knew that I must be high and usually I was.  I consider that to be a sad reflection on my life. I remember saying to my endo a few years ago that it would be ironic if I spent my whole life “low” and then got killed off by a sliding scale insulin dose on my first day in a nursing home without getting to enjoy the extra years that my good control supposedly granted me.

If you spend much time in online Type 1 message boards, it’s easy to find yourself trying to keep up with people who say that their BG never goes above 120 or 140 and who belong to the Flatliners Club with level tracings between the lines on their CGMs. Even with good A1c’s, those are unrealistic goals for me. I rarely have a day that I don’t soar beyond 140 or eat a couple of glucose tabs to raise my BG to 85.

Quickly I start to question: “What is good enough?” The biggest improvements in control for Type 1’s grew out of the DCCT (Diabetes Control and Complications Trial) in 1995. This study proved conclusively that better A1c numbers resulted in huge reductions in eye, kidney, and nerve complications for Type 1’s. But lest you conclude that this means that you are a failure if your A1c is not in the 5.0-6.5 range, the group which used intensive therapy and was rewarded with a significant lower rate of complications had an average A1c of 7.2%.  Currently the American Diabetes Association (ADA) recommends that people with diabetes  target an A1c of 7.0 or lower. The American Association of Clinical Endocrinologists goes a bit lower with a recommendation of 6.5%.Dexcom Flatliner

What is the return on investment if you get down to 6.0% or 5.5%?  Dr. Bernstein preaches that your A1c is not “normal” until it is down to the range of 4.2 – 4.6%. Until recently, the idea of such low A1c’s for Type 1’s was unheard of and totally unrealistic.  There are no research studies to measure the benefits of targeting truly normal A1c’s for people with diabetes. We don’t really know if the work to obtain an A1c of 5.5% has significant payoffs compared to an A1 of 6.5%. Although there are some studies that indicate that maybe high variations in BG are worse than a somewhat higher but level BG trend, we really don’t know.

In recent years, Joslin has been studying people who have had Type 1 for fifty years or longer. They are attempting to find why this group of Type 1’s has continued to thrive while many of their contemporaries have either died or been saddled with devastating complications. Being relatively complication-free after 37 years makes me believe that if there is something protecting the Joslin Medalists, I share in their good fortune.

In addition to the Joslin 50-year Medalists, there are the ubiquitous stories of long term Type 1’s who are healthy despite doing nothing right.  In a January 3rd blogpost, Scott Johnson talks about a recent stellar eye exam and tells the story of an old timer T1 whose prescription for good health is:  “Stay away from doctors and have at least two beers each day.”

I have recently raised my target BG levels on my pump. When hiking, I have stopped correcting numbers in the 140-160 range and have been rewarded with a few 8-12 mile hikes with no significant lows or highs. I continue to argue that some of my recent low A1c’s have fewer lows than previously higher A1c’s because I’m not over-correcting highs.  Because of eating a relatively low carb diet and using a Dexcom G4, I have fewer lows than I used to and almost no severe lows.  So I don’t want anyone to think that this post is a pity party at all.

So what’s a girl to do?  I have no great words of wisdom except to make sure that you have good and protective genes…. I also believe that consistent exercise is a band-aid for blood glucose excursions from too much chocolate and ice cream. I am a huge supporter of CGM technology that allows me to lower my targets with the confidence that I will get warnings when my BG drops too low.

I have come to terms with the idea that I am incapable of doing “worse” in my diabetes care. Meri at Our Diabetic Life wrote a recent post questioning whether it was a problem constantly overriding the recommendations of her boys’ pumps. As a super-mom who is occasionally criticized for trying too hard, she doesn’t know any other way than doing her best. My comment on that post emphasizes that I am the same way:  “But for those of us wired to always try hard, how can we attempt to not always try to do our best?”

My best. That’s me and I don’t know any other way to do it.  And if what I think is the best isn’t really the best, then that’s just the way it is.

The Crusade Continues

Sue B_Head Square

As 2013 comes to a close, I can’t help but think about all the ways that I’ve grown this year.

At the start of  the year, I was waiting to hear from the Administrative Law Judge’s office to find out when my husband was going to get a date for his Medicare appeal for his CGMS. Before we actually got the date, I saw a Letter to the Editor in Diabetes Forecast Magazine from Janice Allen in Foresthill, California asking why Medicare would not cover her CGMS. That prompted me to Google her name and attempt to find her address. Fortunately Google is an amazing tool and there is almost nothing that you can’t find on it. I wrote Janice a letter and was pleasantly shocked when she called me within a few days of mailing it. That was the start of my advocacy. After I spoke to her, I decided that something needed to be done to change the Medicare CGM guidelines and if not me, who else? I was really tired of sitting on my hands and taking chances day-by-day with my husband’s life because he didn’t have a working CGMS.

I started surfing around the internet and came upon the American Diabetes Association Forums.  I found a post there from a woman in New York with a reference to CGMS. So I put a comment on the post and that started a wonderful friendship with Sue from New York. We quickly became fast e-mail friends and that translated a short time later into phone friends. Through her, I met Laddie who graciously offered me the opportunity to guest blog on her site. Laddie is one terrific person. Aside from the fact that she’s a gifted writer, she’s a good friend as well. She’s my go-to person for education about diabetes since I am not a diabetic and there is so much that I don’t know about it. She has also helped me tremendously as I navigate the blog world as a regular contributor to Test Guess and Go.

After my first blogpost I started hearing from others who were experiencing the same problem as my husband. They also were denied coverage of the CGMS. All are on Medicare; some are paying for their CGMS out of pocket and others, like my husband are going without. All are suffering in some shape and form because of Medicare’s decision not to pay for the CGMS.

Recently I was fortunate to connect with a Massachusetts woman, Carol Lewis, who shared the information that on December 11, 2013, Congresswoman Carol Shea-Porter of New Hampshire introduced a bill into Congress addressing the problem of CGM coverage by Medicare:   H.R. 3710: Medicare CGM Coverage Act – to amend title XVIII of the Social Security Act to provide for coverage of continuous glucose monitoring systems (CGMS) as durable medical equipment under Medicare, and for other purposes.  In this bill, CGMS coverage will include a transmitter, receiver, sensors, and test strips required for use. This is the first time, to my knowledge, that anyone in either Congress or the Senate has attempted to do anything about CGMS coverage. In early 2014 I will be posting more information about this bill and asking everyone to contact their Congressperson to request that they support this bill.

I have always shied away from calling attention to myself, but over the past year I have found that this is no longer possible. I have a husband who has a specific need and that need is a CGMS which for him is lifesaving. I can’t sit around and watch while he goes day in and day out without one. I also can’t sit around and watch anyone in the future who might need a CGMS go through the same process that we have been going through. It’s long and arduous and there have been many times when I’ve felt like throwing up my hands and packing it in. But each time I’ve felt this way, someone has been there to encourage me to continue.

New Year Crusade

I say that it’s my year of growth simply because along the way, I have learned so much about diabetes. I know that I have much more to learn. Along the way, I have met many people who have now become a part of my life. I have blogged. I have developed a relationship with Jim Bock of Diabetes Forecast. He has been a great source of help in having our story told in the magazine in the December 2013 issue. And recently I have developed a relationship with Congresswoman Shea-Porter’s legal assistant as well as Amy Wotring of the American Diabetes Association.

I thank each and everyone who has read my blogs and responded with a comment. I thank Sue and Laddie who have been an integral part of my journey. Most of all I thank my husband Marc who has been my life partner for the past 44 years and who is the reason why this is so important to me. I hope someday in the near future that Marc will open our front door to find a box containing a brand new CGMS that has been paid for by Medicare.

To everyone, I wish you a Happy and Healthy New Year.  You will be hearing more from me in 2014.

THIS POST IS MY DECEMBER ENTRY IN THE DSMA BLOG CARNIVAL.  IF YOU’D LIKE TO PARTICIPATE TOO, YOU CAN GET ALL OF THE INFORMATION AT HTTP://DIABETESCAF.ORG/2013/12/DECEMBER-DSMA-BLOG-CARNIVAL-3/‎

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Always and Never

The December topic for the DSMA blog Carnival is Out with the Old, In with the New – Diabetes Style.  With this topic, anything goes.  Maybe you have a diabetes habit you want to break and replace with a new habit.  Perhaps you are going to revamp your exercise plan and trade in an old workout routine for a new one.  It could be time to put a new focus on yourself, such as limiting some online advocacy in favor devoting time to things you need to stay healthy and happy.  You might be thinking of changing up some current tools (meters, pumps, diabetes apps) for a new version.  Or maybe you have plans to make some food swaps or try a new eating plan.  What ever it is, we want to hear about it!

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Laddie_Head Square“Always” and “Never” are two words that are x-rated in my diabetes vocabulary.  They are absolutes at opposite ends of the spectrum of possible outcomes for every diabetes decision that I make. They give the illusion that I can expect the same results day after day from identical input or that there is a reward for good decisions and a predictable punishment for bad decisions. They are black and white when most of my life is lived in gray. They have voodoo magical powers that the mere utterance of the word is guaranteed to make the “never” thing happen and the “always” thing not happen.  They are the Harry Potter-ish words that like Lord Voldemort “must-not-be-named”.

So instead of saying always or never, I tend to phrase my experiences, expectations, and advice with the words “usually” or “sometimes” or “once in a while”.  The aim of my diabetes regimen is to do things that work most of the time.  Sometimes that means that my breakfast insulin dose yields an in-range result on 7 out of 10 days. Two days I go crazy high and one day I end up chomping glucose tabs to fight persistent lows.  Always NeverSometimes that means that although I am intellectually committed to a lower-carb lifestyle, I make less-than-optimal decisions and have two bowls of ice cream after dinner.  Sometimes that means that I can have a day of high blood glucose readings that seemingly have nothing to do with food, insulin, exercise, pump sites, or anything under my control.

Along the lines of always and never, I avoid making New Year’s resolutions or even pledges to forever change my behavior.  As the beneficiary of good insurance, I currently own what I consider the latest and greatest medical devices with a pump and Dexcom G4. I am anxiously awaiting the Animas Vibe, but that is in the hands of the FDA and totally outside of my control. One of my strengths is that I seem to be able to wake up each morning with the aim of doing my best and then not drown in guilt over my daily imperfections.  My diet is a work-in-progress and my goals for 2014 will be a mirror of my daily hopes in 2013 to do a little bit better than yesterday.

Some people look at the advent of a new year as a clean slate to start anew, change habits, and re-invent yourself. I think in smaller blocks. Every day is a new day. Every hour is a new hour. Every minute is a new minute. If I look back a few years or decades, I can see that I have changed. My diabetes technology has improved along with my types of insulin, diet, and social support.  But there is no single moment when these changes happened. It is all a blur and a morph from this to that.

In summary, although I hate to use the forbidden words, I ALWAYS hope that I can end each day knowing I tried my best and that my best will be sufficient to keep me healthy for many more years of Type 1 Diabetes.  And I hope that I will NEVER be less than supportive and appreciative of my many online and offline friends who share my sweet and pancreas-impaired journey through life. This year and next year and the next year.

This post is my December entry in the DSMA Blog Carnival.  If youd like to participate too, you can get all of the information at http://diabetescaf.org/2013/12/december-dsma-blog-carnival-3/