Fighting the Diabetes Chocolate Demons

This post is dedicated to my friend Carol. I met Carol through my blog and we periodically email each other talking about Type 1 diabetes, Medicare, and stuff like that. She doesn’t live near me and I don’t know if we will ever meet in person. But we share the journey, the joy, and the struggle of women aging with Type 1 diabetes. Thank-you for being part of my life, Carol.

Dear Carol-

The anguish you described in your latest email about chocolate, post-dinner eating, and making “bad” decisions probably rings true for almost everyone with diabetes. In fact it might ring true for every human being who has access to potato chips, chocolate, cigarettes, and/or alcohol. Unfortunately for those of us with diabetes, we have BG meters that provide a visual reminder of how often we have failed to live up to our expectations.

I am good at finding temporary solutions to the problem of evening snacking. I long ago gave up hope of ever totally eliminating it. Sometimes I play games that work for a while. For example I package something like Hershey’s Kisses in plastic bags of 15g carbs. I put them in the freezer and allow myself 1 bag each evening. That works for a few weeks before I realize that nothing is stopping me from grabbing a second or third bag of chocolate. Then I play around with my digital calendar and add a daily resolution event of “No cr*p eating after dinner.” When I am successful, I change the color of the event from a boring gray to a pretty color. It’s stupid, but once again it works for a couple of weeks. Sometimes I put a big “No!” sign on the refrigerator or snack cupboard, but this only works for a day to two. I have a couple more games that frankly are reminiscent of Stupid Pet Tricks…. Another thing I do is have a cup of caffeine-free tea after dinner. That burns up some of the time when I might have the urge to start snacking. Going for a walk after dinner helps but I am usually so active during the day that I don’t want or need more Fitbit steps. Some people learn to knit or crochet and others play computer solitaire to avoid snacking.

I understand some of my triggers for chocolate orgies. Snacking in the late afternoon sometimes leads to skipping dinner and that’s a recipe for disaster. Too much wine before and during dinner definitely ruins my willpower and I don’t keep it in the house anymore. I think my biggest frustration is that I can convince myself that the “correct” insulin bolus will take care of the snack food and I’ll just have a couple of cookies. But it doesn’t work. Never, never, never. It doesn’t work.

Recently I’ve had a string of successful evenings with a Nature Valley Protein Bar (Peanut Butter Dark Chocolate—14g carbs) along with a mug of warm FairLife milk (6g carbs). You can buy the bars in boxes of 5 at the grocery store or in the big boxes of 30 at Costco. I’ve been known to eat two bars, but usually one is enough and the addition of the warm milk extends the enjoyment time of the snack. A friend recently told me about FairLife milk which is ultra-filtered and has half the carbs and sugar of regular milk. I like it much better than almond milk and the impact on BG is minimal.

I know that periodically I am going to relapse from whatever temporary solution I have found and I try to forgive myself for those times. At the same time my slip-ups drive me crazy because my overnights are so much better when I don’t lose the evening munchie battle. My Dexcom CGM doesn’t alarm to lows in the early night hours followed by 2:00AM highs as the junk food digests. My fasting BG in the morning doesn’t randomly pingpong between low and high. A  reasonably-sized evening snack leads to a higher percentage of “good” overnight BG numbers with only minor low and high excursions. My fasting numbers tend to be more stable. I sleep better. I feel better.

Why can’t I do what I know is good for me and what makes me feel better???!!! That’s the million dollar question.

Carol, you described the anguish over our lack of perfection so well. After recently pouring your heart out to your endocrinologist for help, you wrote:

From eating the stupid chocolate I had to have. It is totally the opposite of who I am all day – so disciplined. I’ve asked the Endo for help with the chocolate — counseling for why I need comfort food when I know it’s bad for me? I asked her why I would be 90 after dinner and yet have to have chocolate that I know will spike me to 190?

You call it “Diabetes Distress” and that’s as good a name as any. I have no great advice for you, but I have a lot of understanding. I hope that the next time you beat yourself up over chocolate that you remember that you are not alone. There is no one with diabetes who has ever done it “right” all of the time. Food is a complicated issue as we have to eat to live. Food is our medicine for fighting lows and balancing blood sugars. Foods like chocolate are enjoyable and taste good. Food, especially food with sugar, is addictive. For me there is no doubt than none is easier than one. One cookie and one piece of chocolate don’t live in my world and moderation is often an elusive goal.

Diabetes can easily become a disease of disordered eating, but I think that our distress is not just the chocolate. It’s the relentless pressure of diabetes which is easier to picture as a pile of candy bars than the inner demon of inadequacy as we try to mimic a healthy pancreas.

Carol, it is easy for me to pat you on the head and say what a good job you are doing with your diabetes. Because you are. But it’s harder than that and we can’t pretend that it isn’t. I hope that you may find some answers through counseling. Meanwhile don’t forget to be kind to yourself and remember that you are not alone in your struggles or your successes. If you learn some inner mantras or even Stupid Pet Tricks to tackle the problem, please share. Until then, keep up the good fight.

Laddie

Countdown to Medicare with Type 1 Diabetes:  1 Month / Growing Old with T1D

Laddie_Head SquareI don’t have much to write about this month when it comes to Medicare. I am signed up for Medicare Part A and Part B. I have enrolled in a Supplemental Plan offered by BCBS of MN. I have selected an AARP Walgreen’s Part D drug plan. For better or worse I am ready to tackle Medicare on April 1.

Turning 65 years old and going on Medicare is a milestone in the progression of growing old. It is impossible for me to make this transition without thinking about growing old with Type 1 diabetes. Below you’ll find some of my thoughts.

The idea of “phases of aging” makes sense to me and I am moving into the “young-old” subgroup described in a Lumen Learning sociology course:

The United States’ older adult population can be divided into three life-stage subgroups: the young-old (approximately 65–74), the middle-old (ages 75–84), and the old-old (over age 85). Today’s young-old age group is generally happier, healthier, and financially better off than the young-old of previous generations.

As a young-old person who has lived with Type 1 diabetes for over 40 years, I am the most confident and empowered in relation to my diabetes than I have ever been. That is not going to change on April 1.

When I was diagnosed in 1976, I knew nothing about diabetes and had access to only a few books and magazines. Today the Internet has opened doors to scientific knowledge, professional recommendations, advocacy issues, and the cumulative knowledge of thecountdown-to-medicare-1-month Diabetes Online Community (DOC). Although I don’t blindly follow online diabetes advice and have never consumed okra water, I strongly believe that my fellow people with diabetes (PWD) have taught me almost everything I know about Type 1 and have motivated and empowered me to succeed. Continued learning about diabetes won’t go away just because I get a Medicare card.

I have lived a privileged diabetes life and have never worried about access to care. I understand that I will have a huge learning curve when it comes to getting supplies and medications under Medicare. I am not yet losing sleep over potential roadblocks although I know that it is naive to think that there won’t be any.

There is no doubt that improvements in both insulin formulations and technology have allowed me to reach age 65 in reasonably good health. I can’t envision what my health status would be (or if I would even still be alive) had I continued on my 1976 insulin regimen of one injection a day and no home BG monitoring. Insulin pumps and CGMs have exponentially increased the quality of my life. I can’t even begin to hypothesize on how and if Medicare will cover future diabetes tech such as artificial pancreas systems.

In some ways I am living with a different diabetes than at other stages of my life. Although hormones never completely disappear, they don’t rage as much for me anymore and are usually more predictable than when I was younger. In Figure 5-2 of Think Like a Pancreas, Gary Scheiner shows graphs of “typical basal insulin levels by age group.”

fullsizeoutput_19f0

The thick line is for ages 60 and older and shows a decrease in total basal insulin along with a sharper rise in insulin needs in the early morning hours. I am experiencing both of those changes and they didn’t make sense to me until I saw Gary’s chart. Most of my bolus ratios have remained the same so far.

Hypoglycemia unawareness is a mixed gift bag as I move into my senior years. On one hand, I feel better because I don’t get the sweats, shakiness, blurry vision, and insatiable hunger of my younger years. I also don’t tend to over-treat lows and multiple bowls of Frosted Flakes at 3:00am are a distant memory. At the same time I know that hypoglycemia is a huge problem for seniors with diabetes and my risks for falls, hospitalization, and permanent disability resulting from severe lows will increase. Knowing that Medicare will soon be covering CGMs for seniors is a huge relief, but I won’t consider it a done deal until I am approved under the not-yet-established CMS guidelines.

When I look at my diabetes, I am comfortable believing that I will be in control of my diabetes throughout my “young-old” years and hopefully well into my “middle-old” years. It is likely that I may require help with care at some point in my “old-old” years…. That terrifies me because I don’t trust anyone else to take care of my diabetes and my biggest fear of aging is losing independence.

Aging is a process. My life isn’t going to be much different on April 1 than it was on March 31. I’ll still have type 1 diabetes and will continue to test my blood and take insulin. I’ll still have arthritis and sometimes I worry more about that than diabetes. But one change that will happen is that I will finally start using the red, white, and blue Medicare card stashed in my wallet. Wish me luck.

Countdown to Medicare with Type 1 Diabetes: 2 Months / A Decision

Laddie_Head SquareI’ve made a decision, but will it matter in the long run?

A month ago I planned to sign up for a Platinum Blue Cost plan offered by Blue Cross Blue Shield of Minnesota. It seemed to promise a relatively easy transition into Medicare with the option of switching to the Senior Gold Supplemental plan within 12 months with no health questions. I believe that longterm Senior Gold is a safer plan for me because it covers all Medicare providers, guarantees no reduction in benefits, and provides better coverage when I am out of state. Unfortunately it is more expensive, mandates the use of Competitive Bidding suppliers, and requires the purchase of a separate drug plan. It should be okay for me to start on Platinum Blue and then switch to Senior Gold for 2018, but the BCBS rep has not been able to give me a link within the policy guaranteeing the ability to switch. I don’t trust anyone in today’s healthcare environment and I’ve decided to dive headfirst into Senior Gold and traditional Medicare.

Like most people living with a chronic medical condition, I am stressed to the max considering the present and future of healthcare in the United States. I am working to stay informed and involved in advocacy while protecting myself from going batshit crazy. I am rationing Facebook time, newspaper reading, and TV news. I am not worried that I willcountdown-to-medicare-2-months ever be in the position of having no access to some level of diabetes care. It may not be a state-of-the-art insulin pump and CGM, but I have to believe that I will always have access to insulin. I worry for other seniors who do not have the resources than I have. I worry for younger people as the protections of the Affordable Care Act (ACA) are repealed without a plan for the future. I worry that some of our elected representatives are more interested in reducing healthcare costs by limiting access to care rather than reining in costs, particularly drug costs.

The future of Medicare is a big unknown and I have read articles that suggest that the repeal of the ACA and changes to Medicaid will precede any major changes to Medicare. At the same time Tom Price, Trump’s cabinet nominee for the Department of Health and Human Services, is in favor of privatizing Medicare and House Speaker Paul Ryan has pledged to reform Medicare in 2017. A recent article in Forbes suggested that Trump might surprise everyone and come out in support of MFA (Medicare for All). So who knows? All I know is that we are in for a wild ride and probably not a ride that will be fun for people with pre-existing health conditions. I will enter Medicare trying to make the best choices I can while knowing that my choices might not matter at all as we move into a crapshoot future.

I haven’t selected a Part D drug plan yet. I currently take three drugs, four if you include insulin. Two have good coverage with any plan. The third is well-covered as a Tier 2 generic drug in the BCBS Platinum Blue formulary. Unfortunately this same drug is non-formulary and/or covered poorly in Part D plans. It’s been a good drug for me but not so great that I won’t be willing to switch to something more affordable.

I have received notification from SSA that I have been accepted into Parts A and B of Medicare. I have not yet received my Medicare card and that is required before I can apply for a supplemental or drug plan.

I am not dreading Medicare as much as when I started this series almost a year ago. I know some people with Type 1 diabetes who are thriving on Medicare and have learned to navigate the system to get the care and supplies they need. I know others who live on a 90-day cycle of frustration and fear as they repeatedly run into roadblocks getting test strips, insulin, and pump supplies. I know that I will go crazy when things don’t happen the way I expect and I will scream at automated phone menus. But I choose to be optimistic that I will get everything figured out. That might be blind, stupid optimism and I reserve the right to change my tune at any point in the future and start cursing and howling at the moon.

Medicare and CGM Coverage: Love Your Receiver!

Laddie_Head SquareI was surprised, thrilled, elated, stunned, relieved, and every other adjective that you can think of when I received Friday’s mass email from Derek App, JDRF President, with the breaking news:

CMS Labels Continuous Glucose Monitors as Durable Medical Equipment

JDRF is pleased to share that the Centers for Medicare & Medicaid Services (CMS) decided today to recognize continuous glucose monitoring (CGM) devices approved for use in making diabetes treatment decisions as durable medical equipment, a significant step toward making them eligible for coverage under Medicare. Today’s decision lays a pathway toward extension of Medicare coverage for the devices that will bring the nation’s largest insurer in line with the vast majority of the country’s private payers. Although the significant benefits of CGM use have been known since 2008, CMS had previously refused to consider covering the devices under Medicare, saying they did not meet the statutory definitions of durable medical equipment or any other category the agency could cover. Today’s decision removes that impediment.

In recent years I have wavered between optimism and pessimism as I advocated, hoped, and prayed for Medicare coverage of continuous glucose monitors. Now it looks as though the day is coming! I don’t know how long it will be before procedures are in place for receiving reimbursement, but it will be soon. Soon may mean later in 2017. Soon may mean 2018. But there is finally a path in sight for Medicare reimbursement of CGM’s.

Today I read through the 15-page CMS Ruling with a yellow highlighter. You will find some of the specifics of the report well-described in Mike Hoskins’ Diabetes Mine article:  NEWSFLASH: Medicare Will Cover Some CGMs Now! Below I will expound on a couple of Mike’s points and then talk more about the specifics of durable medical equipment.

Dexcom Only: This ruling only applies to the Dexcom G5 because it is the only CGM approved by the FDA for insulin dosing. Therefore the G5 is the only system that fits the definition of a “therapeutic CGM.” Currently CGM systems by Medtronic have not been approved for insulin dosing and are considered “non-therapeutic.” They do not fit the definition of Durable Medical Equipment (DME).

No Guarantee of Coverage: This ruling only states that therapeutic CGM systems fall within the scope of Medicare Part B DME. There has not yet been a national coverage determination to guarantee approval if one satisfies still-to-be-determined coverage criteria. Right now MAC’s (Medicare Administrative Contractors) have the option of issuing local CGM coverage determinations or coverage may be obtained on a claim-by-claim basis. What does this mean? We will learn as Medicare beneficiaries begin filing claims for CGM coverage. You can bet that I will apply for coverage as soon as possible after starting Medicare in April.

All Types of Diabetes: Just as people with all types of diabetes are able to receive coverage for home BG monitoring, all PWD will be eligible for CGMs according to this ruling. Don’t get too excited because IMO the coverage criteria will most likely restrict reimbursement to some people with Type 1 diabetes and some insulin-using Type 2’s. Just as it is more difficult for Type 2’s to obtain coverage for insulin pumps, it may be more difficult for them to obtain CGM coverage. But this is still an improvement over the 2015 congressional bills (S.804 and H.R.1427) that specified Type 1 diabetes.

One thing not addressed in Mike’s article is how the Dexcom G5 fits into the Medicare definition of Durable Medical Equipment (DME).

According to the CMS ruling, there are 5 criteria which must be established in order for a device to considered as DME:

  • Can withstand repeated use;
  • Effective with respect to items classified as DME after January 1, 2012, has an expected life of at least 3 years;
  • Is primarily and customarily used to serve a medical purpose;
  • Generally is not useful to a person in the absence of an illness or injury; and
  • Is appropriate for use in the home.

Home blood glucose meters and supplies have been in this category for a long time. Technically the meters are “durable” and have an expected life of at least 3 years. For “multicomponent” systems, the other components are covered as long as one component (the meter) is “durable.” Therefore test strips are covered because they are an integral part of the system.

Looking at the Dexcom G5 system, CMS quickly specifies that sensors with an expected life of 1 week are not durable. Neither are transmitters with an expected life of 3 months. So we are left with the receiver. According to CMS, “reliability analysis data from an engineering firm that evaluated the receiver component of the recently approved therapeutic CGM predicts a lifetime of greater than 3 years for the receiver.” CMS goes on to say that the receiver “is the only component of the therapeutic CGM that can be considered durable and satisfy the 3-year MLR criterion of the definition.”

What does this mean? It means Love Your Receiver!!! Without the receiver, the Dexcom G5 system does not satisfy the criteria for DME.

dexcom-love-your-receiver

The FDA approval of the G5 system required the purchase of a receiver and many people complain about that requirement since they use their phones as the receiver. Just know that CMS is never going to classify your phone as a reimbursable medical device, so cherish your receiver even if you never take it out of the box. If you’re not on Medicare, still cherish your receiver so that seniors can receive CGM coverage! Also Medicare coverage of CGM’s is important for everyone because it is a vital component to coverage of artificial pancreas systems.

In the coming weeks and months, we will learn more about the implementation and impact of this CMS ruling. If you’d like to learn more, here are a few links.

Text of CMS Ruling

Diabetes Mine Analysis  

Diatribe’s Preliminary Analysis

Expanded Statement from JDRF

And no matter what, don’t forget to Love Your Receiver!

 

Countdown to Medicare with Type 1 Diabetes: 3 Months / It’s Happening

Laddie_Head SquareOn April 1, 2016 I started writing about my journey to Medicare with the sentence  “A year from today I will be on Medicare.”  With 3 months to go I’m not yet at the finish line. However, on January 1st I entered my “Initial Enrollment Period.” That means that I can finally start doing something about Medicare rather than just talking about it.

Tuesday morning I applied for Medicare benefits online. (I did not apply for monthly retirement cash benefits because as someone born in 1952, my NRA (Normal Retirement Age) to receive full benefits is age 66.) Enrollment in Medicare Part A (Hospital insurance) and Part B (Medical insurance) or Part B only is required before I can apply for a supplemental or cost/advantage plan in my state. Therefore I will need to wait for proof of enrollment and I assume that will be my red, white, and blue Medicare card.

The online enrollment was easy and I immediately received an email confirming my application. About 24 hours later, I received an email from SSA.gov indicating that my application was being processed and I could expect to receive a letter within 30 days.

Thank you for filing your Social Security application online. Our Social Security Office in CHICAGO, IL received your claim and will be working with you to process it. Our goal is to process all applications efficiently.

A representative may call you for more information at the phone number you provided on your application. Please be aware that our representative may call you outside normal business hours, such as on a weekend or during the evening. If we are unable to reach you by phone, we may also contact you by e-mail or U.S. mail.

You should receive a letter in the mail within 30 days with a decision or to request additional information. If you have a future month of entitlement, you should receive a letter in the mail approximately thirty days before your benefits should start. Also, you can check the status of your application at Status of your application or you may call us at (800) 842-0588 with questions. Please wait five days from the time that you filed before checking the status online.

Now my job is to reply to any requests for further information from a SSA representative and then to wait.

countdown-to-medicare-3-monthsUnless something happens in the next month to change my mind, I have decided to enroll in a Platinum Blue Cost plan offered by BlueCross BlueShield for 2017. I will write more about the decision in a future blogpost, but this plan essentially “cushions” my entrance into Medicare. It allows me to use BCBS DME suppliers and not deal with Competitive Bidding. It exempts me from several other Medicare regulations such as seeing my pump-prescribing physician every 3 months and extensive record keeping to justify more than 3 test strips per day. It includes prescription coverage and for the most part functions like the commercial insurance I currently use.

With any Cost plan in Minnesota I would have 6 months to switch to a Supplemental/Medigap plan with no questions about pre-existing health conditions. However, by going with the BCBS Cost plan, I am allowed 12 months to switch to Senior Gold, the supplemental plan offered by BCBS. I am still not sure about the best Medicare plan longterm, but this strategy buys me time to consider that choice again for 2018.

So now I wait.

Countdown to Medicare with Type 1 Diabetes:  4 Months / No Decision

Laddie_Head SquareI thought that I would have made a decision about Medicare by now and I haven’t. I don’t feel that I am much closer to a “right” decision than I was a few months ago. I have narrowed my choices to 3 plans: 2 Cost plans and 1 Supplemental plan. Each plan has definite pluses and minuses.

About 6 weeks ago I was close to making the decision to go with one of the Cost plans offered by BCBS of MN. The advantages of this plan are reasonable cost, excellent coverage for pump supplies, formulary inclusion for all of my drugs, and a preferred test strip brand that I am satisfied with. It allows me to use BCBS DME suppliers without dealing with the Competitive Bidding suppliers of Basic Medicare. With this plan I will have 12 months to change my mind and switch to the BCBS Supplemental plan with no consideration of pre-existing medical conditions. Therefore I can stay on this plan for all of 2017 and have all Medicare options available in 2018. The major disadvantages of this plan are no CGM coverage and that starting in 2017, Walgreen’s is not a preferred pharmacy. I have always had great service with Walgreen’s and my first choice is to stay with them.

A couple of weeks ago it was announced that Fairview, one of the major health systems in Minnesota, has not come to a network agreement with BCBS for 2017. Therefore many of my health providers will be out-of-network if I choose a BCBS Cost plan. I believe that an agreement will eventually be reached, but….

The second Cost plan that I am considering is offered by HealthPartners. The main advantage of this plan is that it provides CGM coverage. It should be a no-brainer to go with this plan, but co-pays for pump supplies and test strips cost substantially more than on the BCBS plan and the total cost of the two plans is about the same. Plus the preferred brand of test strips for HealthPartners is one that I have not had good success with. I will only have 6 months to revert to Basic Medicare and a Supplemental plan and I will need tocountdown-to-medicare-4-months re-evaluate my options partway through 2017.

The Supplemental plan that I am considering is BCBS Senior Gold. The advantages of Senior Gold are that benefits will never be reduced in the future and I can take the plan with me if I move out of Minnesota. With this plan I will experience few or no out-of-pocket costs. There are no network restrictions and I can see any provider who accepts Medicare. I can always choose to switch to a Cost or Advantage plan in the future. The downside is that Supplemental plans follow Medicare guidelines and there is no CGM coverage. Also I will be forced to use Competitive Bidding suppliers for mail order test strips and pump supplies. I will be required to see my endocrinologist every 90 days in order to receive pump supplies. Although this plan allows the most flexibility for future coverage, it is substantially more expensive than the two Cost plans I am considering.

I don’t know what I am going to choose. I have a list of questions that I will present to an insurance broker I have been in contact with and to a representative from my local SHIP agency. Because I do not need to make my decision until February, I have avoided recent contact with these consultants until the Medicare Open Enrollment period ends today.

Last month I wrote about the anxiety I was experiencing as I thought about Medicare. Today I am not worrying about it. Frankly there are so many unknowns that I am beginning to think that it may not matter what I decide. I have written that Medicare Cost plans are unique to Minnesota, Wisconsin, and a few other states. I was told by a representative from BCBS of MN that these plans will probably be disappearing in the next year or two due to pressure from Medicare. They will be replaced by Advantage plans with different guidelines and network restrictions but more similar to plans offered in other states. The plan I select now may possibly not exist in two years. I know people with diabetes who are using Supplemental plans. I know people with diabetes who are using Cost or Advantage plans. Whatever I select, I will be part of a population of people with diabetes who are in the same boat as I am.

Meanwhile a Trump presidency along with a Republican-controlled legislature is an indication that we may see substantial changes to Medicare in the coming years. Will current Medicare beneficiaries be exempt from future changes or will we all move into a new unproven system? What will happen to people with pre-existing conditions and serious illnesses?

I don’t know the answers to these questions. The only thing I know is that there may not be a “correct” decision for me to right now. There are different decisions. There is Plan A, Plan B, and Plan C. Maybe my choice will make a difference. Maybe it won’t.

I just don’t know.

Healthy Lunch Day

Laddie_Head SquareI have been a quiet blogger this November and done little to advertise or celebrate diabetes month. I was an active participant in the Big Blue Test but that was all behind the scenes. I have read the wonderful blogposts by other diabetes advocates and  chosen not to feel guilty for my lack of participation.

This morning I received an email from Chelsea at the American Diabetes Association asking me to participate in the second annual Healthy Lunch Day which is celebrated today. Easy enough because I eat lunch almost every day and it is usually a “healthy” meal!

A salad is my most common lunch and today was no exception. The base was a Mann’s Power Blend containing Brussels sprouts, Napa cabbage, kohlrabi, broccoli, carrots, and kale. I topped it with raspberries, leftover cooked broccoli, a hard-boiled egg, and a yogurt-based dressing. I guessed the carb count to be 18 grams and bolused accordingly.

fullsizeoutput_1a22I tend to spend two or three hours each afternoon at my kitchen table “desk” and like to avoid BG spikes with a lowish carb lunch. I go heavy on vegetables and berries to make up for my oatmeal breakfast that has nothing green or colorful.

So here’s to #HealthyLunchDay and the ADA’s November theme of #ThisIsDiabetes. My lunch was healthy and I have diabetes, so it’s a perfect fit!

Countdown to Medicare with Type 1 Diabetes:  5 Months / Anxiety

Laddie_Head SquareThere are frequent online discussions about addressing mental health issues along with physical concerns when living with diabetes. I am lucky to be mostly immune from things like diabetes burnout and depression. I don’t like diabetes but it doesn’t haunt or slow me down much. I come from a family with a history of depression but its dark clouds have never settled over me for very long. Still…

I have a tendency towards anxiety. The kind of worry that radiates in my chest and aches in my belly. It has never been so crippling that I have felt the need for professional help and I have been helped by progressive relaxation tools I learned from a book many years ago. Deep breathing and exercise also help.

I am very in tune with my anxiety. It surfaces when I need to make a decision or address a problem and I don’t feel in control. Sometimes the issues are trivial or at least very fixable, but my rational brain can’t convince my gut that I shouldn’t be stressed. I won’t call them silly, but my anxiety worries are not life-or-death. Maybe it is a leaky roof. Maybe it is a grandchild getting her feelings hurt. Maybe it is Christmas. Maybe it is thinking about what needs to be done to sell our house and we don’t even plan on selling the house.

Maybe it is Medicare.

I have been trying to get a handle on Medicare options for several months. I haven’t decided whether I know too much or not enough. I wake up many nights at 2:00AM and start thinking about Supplemental versus Cost* plans. I walk the dog and my stomach cramps thinking of Competitive Bidding. Part B insulin and test strip brands are a constant concern. This stuff is important, but not so important that I should be losing sleep.

But anxiety does not always make sense.

I finally have premium costs and plan information for 2017 and I am making worksheets to compare my options. I have only one decision that could have an impact beyond my first year on Medicare and that is the Supplemental versus Cost plan decision. Supplemental (Medigap) policies are only required to accept me (a person with pre-existing conditions)countdown-to-medicare-5-months during the first 6 months that I am on Medicare. After that I can be denied coverage or charged higher rates. At the same time there are guidelines about having guaranteed Medigap rights and some of those scenarios will grant me needed flexibility in the future.

The things that stress me are discrepancies like one plan agreeing that insulin for a pump will be covered under Part B and a similar plan saying it won’t. (That can be a big deal because Part B insulin does not go into donut hole calculations.) I think the plan saying no is wrong, but what do I do about it and do I dare risk signing up with that company? I need to consider that company because it happens to offer CGM coverage. Yes, I am lucky to have the option of CGM coverage with one plan! But I need to consider the whole package, not just one thing. More homework to do.

Another thing that is stressful is trying to figure out what pump and testing supplies cost. For the most part I have been using the negotiated prices from my current BCBS policy. But one friend shared his test strip cost info with me and it looks as though he is paying 20% of what I consider a high retail price compared to what a negotiated price should be. Am I right? Right or wrong it certainly makes me wonder what prices I should be using to figure out my anticipated costs.

Another thing that kicks me in the gut is competitive bidding. This is only relevant if I choose a Supplemental plan because Cost plans use their own suppliers. DPAC has published a couple of blogposts recently that scare the bejesus out of me. One post was written by a person with diabetes on Medicare and the other was written by someone who owns a durable medical equipment company. These are great articles to spur advocacy, but frightening for those of us anticipating Medicare.

One benefit of participating in the DOC is that I have support from other people affected by diabetes. A downside is that I read stories of people having nightmare experiences with Medicare. As a blogger, I get emails from readers sharing their stories and problems. At the same time I know many people with Type 1 who are doing fine on Medicare but those people don’t write much about their experiences. I mostly hear the bad stuff.

anxiety

I have anxiety. Some of it is unreasonable. I live in Minnesota and have several good (not perfect) options for Medicare. My husband still works and his income will provide a buffer from the shortcomings of Medicare. At the same time some anxiety might be reasonable because healthcare reimbursement at all levels in the United States is under siege and people with diabetes are getting hit particularly hard.

I expect that my next Countdown to Medicare post in December will outline some specifics of my choices. Obviously cost is a major concern, but so are things like drug formularies, test strip brands, and requirements for getting pump supplies. I have already eliminated choices that do not network my current doctors and I am looking at the plans of two different companies. It is likely that I will choose a plan that allows me to avoid competitive bidding because anyone with a tendency towards anxiety might not survive that disaster.

More to come. 😀

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**Minnesota is one of very few states that offers Cost plans. These plans are hybrids that combine features of traditional Medicare and Advantage plans. Most people reading this post will not encounter Cost plans in their Medicare journey.

A Diabetes Data Machine

Laddie_Head SquareI am currently involved in a couple of projects that require tracking my diabetes data. The good part is that some of the data is automatically logged with little or no input from me. The bad part is that I am using 3 different apps on my phone and must enter food information twice. The good part is that I have learned new things about my diabetes. The bad part is that I am uber-involved in the input of data and not paying much attention to the output.

Big Blue Test

Most of you are familiar with the Big Blue Test sponsored by the Diabetes Hands Foundation. Every test logged between October 14 and November 14 will result inBig Blue Test Logo a $3 donation to support people with diabetes. Three charities will receive $5000:  Diabetes Sisters, We Are Diabetes, and the Riverside Community Diabetes Collaborative.

The Big Blue Test is by far the easiest of my current data projects. I use the app on my phone and it’s a quick 30 seconds to record my exercise. Although participation is easy, I am no Big Blue Test slouch. Yesterday I managed to input 5 (!) tests. Dog walk. Gym session. Rake. Rake again. Dog walk. That translates into a $15 donation for diabetes.

If you are participating in the Big Blue Test, keep up the good work. If you are not involved, check out this link to learn more. It’s not just walking and running. You can include housework, yard work, weight work, and dancing. You can help a couple of diabetes groups while receiving the physical and mental benefits of moving your body. Sounds like a win for all.

mySugr Consulting

I continue to be a beta-tester for the mySugr consulting module. As outlined in my September post, mySugr is launching a feature to allow virtual coaching from Gary Scheiner and the team at Integrated Diabetes Services. You can learn more about themysugr-copy program here and here.

Today I am not addressing the coaching experience except to say that Gary Scheiner does a better job of understanding my D-data than I do. Instead I am writing to share that amazingly I am still logging after 3 months!

I am still learning shortcuts for entering my data and have reduced the number of data points I am tracking. I continue to enter food and carb counts, but don’t classify the food anymore as vegetable, meat, etc. Similarly I am not distinguishing between food and correction bolus amounts, just total insulin. What I like about mySugr is the ability to customize my logbook to show only the data points that are important to me and to list them in an order that makes sense to me.

My newest “cool” discovery about mySugr is that if I use the workout app on my Apple Watch, it automatically transfers the activity to mySugr. Another diabetes/life datapoint automatically logged!

Glu and T1D Exchange

Glu is the patient community of the T1D Exchange and provides an easy way to participate in research relating to type 1 diabetes. I am currently part of a study about blood sugar results and treatment satisfaction for T1 adults using pumps or multiple daily injections.blip_logo

The logging requirements of this study are not difficult because most of my data goes into Tidepool’s Blip. If you don’t know about Tidepool and their innovative diabetes apps, check it out here. I download my Animas pump and Freestyle meters once a week. My Dexcom CGM automatically links with the Blip Notes app on my iPhone. My only daily responsibility is to create a Blip note whenever I eat. I click on #food and record the meal with the carb count. To make it easy, I copy and paste the meal info just entered into mySugr. Takes 30 seconds or less.

Where to from here?

The Big Blue Test ends November 14.

The mySugr logging has no end date and I’ll keep at it a while longer. But not forever.

The T1D Exchange study lasts 4 weeks.

I have learned a lot from this intensive logging. I tend to eat a little bit all of the time and now have visual proof that my BG is better when I eat more at meals and reduce snacking. I have done some basal testing and am seeing better CGM tracings. Better basals allow for less snacking.

But I am tired of logging. My head is exploding with numbers and my brain is drowning in data. I am thinking about diabetes too much and will be happy to quit recording my life in a couple of weeks. Being a diabetes data machine is fine for a while, but for me the benefit gets lost when I do it too long. For sure I will quit before Thanksgiving because there is no way I want to start the holiday season being accountable for my food decisions….

 

Thoughts on Patient Empowerment

Laddie_Head SquareI recently read two articles by Dr. Niran S. Al-Agba, a pediatrician in Washington State and blogger at MommyDoc. I discovered her posts through KevinMD.com and have added her blog to my Feedly list. As a grandmother with 40 years of Type 1 diabetes, you might wonder why I plan to follow the writings of this young pediatrician. I think it is because her thoughtful views on the roles of patients and physicians in our healthcare system (or lack thereof?) give voice to some of my opinions and experiences.

The first article I read was titled “Building Better Metrics: Focus on Patient Empowerment.” Mid-article Dr. Al-Agba writes something that many of us who use insulin believe is essential: “Patient-centered care is often talked about as a virtue worthwhile to attain because it puts them at the heart of their healthcare team. Empowerment goes one step further by actually giving power and authority to the patient.”

She goes on to share the characteristics of an “empowered activated patient” as listed by ENOPE (European Network on Patient Empowerment):

  • Understands their health condition and its effect on their body.
  • Feels able to participate in decision-making with their healthcare professionals.
  • Feels able to make informed choices about treatment.
  • Understands the need to make necessary changes to their lifestyle for managing their condition.
  • Is able to challenge and ask questions of the healthcare professionals providing their care.
  • Takes responsibility for their health and actively seeks care only when necessary.
  • Actively seeks out, evaluates and makes use of information.

I don’t know about you, but I believe this list describes me and many of us living with diabetes. At least most of the time.

The second article by Dr. Al-Agba is titled “Building Better Metrics: Patient Satisfaction Can Be Done Right!” Building on the first article, she writes that physicians are often more comfortable with “standards of care” and need to become more comfortable in the role of giving information, sharing options, and empowering patients to take more control. She goes on to discuss that sometimes that means disagreeing with a patient’s decision while respecting the right of the patient to make that decision.

That idea really hit home for me based on a recent experience with a new physician. My longtime internist retired this summer and suggested that I follow one of his younger partners to a nearby clinic that is part of a large provider system. Until now all of my doctors have been part of independent clinics. Such practices are starting to be an anomaly in big cities and I was not opposed to moving into a “system.” I knew that it wasdoctor-patient-respect probably a good idea to narrow my network of doctors as I look to future health insurance and Medicare restrictions.

In August I had my annual physical with the new internist. He asked several questions and for the most part seemed to accept my answers. Many queries seemed to be coming from a computer-generated checklist which I suspect was labeled “Old Lady with Diabetes.” I had to fight the urge to say “Hey, that’s not me!”–because of course that is me. Our only area of conflict was over statins which I have resisted up until now. In May I wrote about my previous doctor’s support for my decision to avoid that class of drugs. I felt a bit bullied by the new doctor but given that it was his first week in the new system, our first meeting, and already an overly long appointment, I decided to let it go. And I agreed to give statins a try.

Two months later I am experiencing clear side effects from the statin drug and have chosen to stop taking it. One thing that I love about my new medical system is a complete online health record along with the ability to send secure messages to my health team. I was able to share my statin decision without talking to anyone or feeling that I was hiding something from the new medical team. I wrote several drafts of the email and believe that I ended up with a respectful but confident and empowered message.

I did not get a reply to the message nor did I expect one. I am sure that it will be a item of discussion next time I see this doctor. I am very comfortable with the idea that he can strongly disagree with my decision. However, I need to feel that he respects my right to make that decision. If not, I will look for a new internist. However, based on most of the August appointment, I am optimistic that as we get to know each other, we will do just fine. Fingers crossed.