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Close, but(t) not close enough.

“My mom?  She has brown hair and a red shirt,” said my daughter’s playgroup friend, climbing up the jungle gym.

“My mom is over there.  She has a pump in her butt,” my daughter pointed towards me and waved, causing me to quickly answer the look of surprise on the other parents’ faces with a brief, panicked explanation of the insulin pump connected to the top of my left hip.

 

Missed Manners.

So this popped up as a Q&A in a recent Miss Manners column:

“DEAR MISS MANNERS: I am a businessman who frequently flies both domestically and internationally. I also happen to be an insulin-dependent diabetic.  I currently do my glucose testing in my seat. It does involve using a lancet device to get a drop of blood to test, but is fairly unobtrusive. Of course, all lancets, alcohol preps and test strips are stored in my test kit for proper disposal later.
Am I being rude to perform this test next to a stranger? Injections I perform privately in the plane’s lavatory. In the airport, I use the counter by the wash basin, since most water closets have no room for insulin vials and other supplies.
Many people seem to stare and resent the fact of performing such a function in this space. I have also had children ask, “What is that man doing? Isn’t that a bad thing?” (They’re obviously thinking of their drug education classes.) Am I too self-conscious?

GENTLE READER: Absent an emergency, medical applications (like bodily functions and grooming) are properly done out of sight — meaning in private or in a restroom — unless they can be done so surreptitiously as to be unrecognizable as such. Miss Manners does not object to a pill taken at dinner, so long as it is not accompanied by a dissertation on your cholesterol.
The technology associated with diabetes is fast approaching this standard, although Miss Manners draws the line at drawing blood. Restrooms exist to provide a proper location for such necessary activities when away from home, and those who use them have no business monitoring the respectable, if sometimes unaesthetic, activities of others.
You may chose to tell children that it is a medical procedure, or ignore them and let their parents do that. Miss Manners would hope that any parents present would also resolve to teach their children to be more discreet with their curiosity.”

Hmmm.  My response:

DEAR MISS(ED) MANNERS:

I am a person with type 1 diabetes, and I’ve been testing my blood sugar regularly for the last 10,000+ days.

Testing my blood sugar is not a bodily function; It’s a practice required for proper diabetes management. It’s not grooming; it’s a medical necessity.  I travel a considerable amount and when I am in transit, I do what is required to take care of my diabetes from the comfort and safety of my seat. I take great care to be discreet in testing my blood sugars, and I properly contain and dispose of my supplies throughout my travels.

I wish I had the option to afford myself the rule of “drawing the line at drawing blood.”  Hell, if I could test my blood sugar without pricking my finger, it would be a great day, indeed.  Restrooms exist to provide a place for travelers to urinate or defecate, and I would prefer not to perform my subtle medical procedure where people are known to perform those actions.  You have no business monitoring the respectable, responsible activities of people with diabetes who are trying to stay alive.

The technology associated with diabetes is fast-evolving and has grown by leaps and bounds since my diagnosis 27 years ago.  But if I took your cue and relegated myself to bathrooms to tend to my diabetes needs, I’d be in the bathroom(s) all the time.  (And everyone on the plane would hate me for taking up the bathroom every hour or so.)  Instead, I discreetly test and medicate as needed, so as to avoid a more serious diabetes issue, such as a severe hypoglycemic reaction wherein I could seize and potentially bite my tongue (causing blood to spill) or accidentally relieve myself (causing urine to spill).  Which is more offensive to you – the controlled, unobtrusive checking of my blood sugar or the unpredictable, emergency effects that may transpire as a result of not checking?

You may choose to tell your readers that it is in bad taste to perform this medical procedure in a public place, but I disagree.  I would hope that you would resolve to teach children and adults alike that taking care of your health is something to be proud of, not ashamed of.  Offer whatever advice you’d like, but at the end of the day and during the course of every day, I will do what I need to do to live with this disease.

 

Guest Post: Crusading for CGM Coverage.

I’ve used a Dexcom continuous glucose monitor (from the 3-day STS system to the G4 Platinum) since 2006, and the positive influence it has had on my diabetes management and overall quality of life is undeniable.  But as it stands now, when I reach the Medicare age, my coverage for CGM use will be denied.  Susan Berger, an advocate and caregiver for her husband (who has diabetes), is working to change that fact.  Today, Susan is guest posting about why CGM coverage is important, and how we, as a community, can help ensure that coverage.

*   *   *

Marc and I were high school sweethearts.  He was a year ahead of me.  When he graduated, he did a four year stint in the Air Force, 18 months of which were spent overseas in Okinawa.  Two months after he was discharged, we were married.  We lived in California for five years and this is where our daughter was born.   We returned back home to the east coast – Philly to be exact, where we lived for one year before moving to Harrisburg, PA and opening up a Hobby and Craft Shop.  We operated that business for 19 years, working side-by-side daily.  We also had a son during this period.  In 1996 we decided to go in a new direction and opened an Italian Ice and Ice Cream Shop, once again working side-by-side.  It was just a few months after we opened this business that Marc was diagnosed with type 1 diabetes.  What an irony to be in a business where you’re surrounded every single day with sweet ices, creamy ice cream and all types of toppings needed to make sundaes, shakes, etc., and being a diabetic.

His diabetes has impacted us in so many ways, probably too numerous to mention in one blog post.  Before he was fortunate enough to have a continuous glucose monitor (CGM), there were many times when his sugar would plunge downward so rapidly that I would either have to rush to get some juice into him if he was still conscious, or if I couldn’t catch it in time, use the glucagon to revive him.  Once he got a CGM (paid for by private insurance) I would describe our life as becoming pretty normal, practically back to prediabetes.  Much of the worry dissipated because we knew that the warning would go off he his blood sugar dipped too low.  When the CGM stopped working, and Medicare disallowed payment for a new one, life became extremely difficult once again.  We were back to all the fear and worry.

Marc has had some pretty close calls and it’s only either by luck …  or God watching over him that he hasn’t caused harm to either himself or anyone else.  There have been two incidences where he became completely disoriented while driving.  Both times he had been stopped by the police and fortunately for Marc, who makes his living by doing quite a bit of driving, his license wasn’t taken away.  When they realized he was diabetic, EMS was called to revive him and once he became cognizant, he was sent on his way.  Then there have been those times when I’ve had to revive him in the middle of the night.  I have used the glucagon many times over the past 15 years but my hands still shake when I have to give Marc a shot.


Our children live in Atlanta and I used to be able to visit them on a fairly regular basis, but now, I never leave Marc alone at night.  If he can’t go, then I can’t go.  I missed a wedding in Los Angeles because he couldn’t take the time off.  And I can’t have weekend get-a-ways with the girls because of the fear of leaving him alone at night.

Medicare guidelines do not provide for coverage of Continuous Glucose Monitors. I am an advocate for my husband who desperately needs a new CGM and previously received CGM coverage under private insurance before reaching age 65. I am a crusader for the entire diabetes community, whether you are on Medicare, will soon be on Medicare, have a Continuous Glucose Monitor presently, or might need one in the future. In December 2013 Representative Carol Shea-Porter [D-NH1] introduced a bill into Congress, H.R. 3710: Medicare CGM Coverage Act, which provides for coverage of Continuous Glucose Monitoring Systems by Medicare if recommended by a doctor. My recent post Baby Steps talked about the bill and many members of the Diabetes Online Community (DOC) asked how they could become involved in this crusade. I have just received an email from Congresswoman Shea-Porter’s Legislative Assistant, Marjorie Connolly, and she suggested the following:

  • The most effective step you can take is to ask your own Representative to cosponsor the bill.
  • Call your Congressperson’s DC office and ask for the email address of your Congressperson’s Legislative Assistant for health issues.
  • Email the Legislative Assistant the text of Shea-Porter’s Dear Colleague letter (link) along with a personal note. That way they will understand why the issue is important to you, the constituent, and they will also have the Dear Colleague to show their boss so that he/she will know how to sign on. The roster of the House of Representatives along with phone numbers is available here.

There are many diabetics such as my husband who never realized that when they went on Medicare, their CGM would no longer be covered. When the denial for coverage comes, and it inevitably will because Medicare considers the CGM a precautionary device, the arduous journey through the Appeals system is daunting, exhausting and psychologically taxing. The wait for a decision is beyond description and we have waited for 8 months. The entire process will only get harder as baby boomers become Medicare-age in greater numbers. We need to do something about this sooner rather than later. The only way to fight Medicare’s denial of the CGM is to get the guideline changed.

The best thing that we can do now is to let our voices be heard and join with Congresswoman Shea-Porter and her new cosponsor, Congressman Matthew Cartwright [D-PA17] in asking Congress to pass H.R. 3710, the Medicare CGM Coverage Act of 2014. Here is the Sample Letter and a copy of Shea-Porter’s Dear Colleague email blast. Don’t delay because the sponsors of this bill have begun their full-on push for support and every voice is important. If you are a fellow advocate and want to know how to help, click to download this document.

Please leave a comment on this post or email me [email in the advocate letter] if I can assist you in any way. You don’t have to be a person with diabetes to write the letter. You can be the son, daughter, mother, father, friend or as myself, the spouse of a diabetic. Please do this for all of those who so desperately need a CGM and can’t afford to pay for it out of pocket.

I love my husband and want him to be around for along time.  This is the reason why I became an advocate.  But just as important, in the time that I have been blogging, I have met many men and women who like Marc need a CGM and can’t afford to pay for the device and the sensors out of pocket.  And I have also been contacted by many who are worried that when their time comes to go into the Medicare system, they will experience what we are experiencing now.  I know that together we can make sure that Congress hears our voices and supports H.R. 3710.

*   *   *

Thank you, Sue, for speaking up on behalf of PWD.  (And for more on this issue, check out Kim’s post at Texting My Pancreas, and look through these discussions on TuDiabetes about CGM and Medicare coverage and on the ADA website.)

Guest Post: How the MiniMed 530G Changed My Diabetes Management (Without Ever Even Seeing it in Person)

SUM is being borrowed today by Christopher Angell, fellow PWD and creator of GlucoLift, so that he can share his thoughts on the Minimed 530G … without having ever seen or used the system.  What is he on about?  Find out …

*   *   *

Leading up to the launch of the Medtronic 530G (and what a long lead-up it was) I kept asking myself “What’s the big deal?” It seemed like, apart from a new sensor (which some data had already shown to be a minimal improvement over their previous sensor, and a far cry from the already-extant Dexcom G4 Platinum) the only real innovation was the introduction of the low glucose suspend (LGS) feature, which shuts off insulin delivery after a series of alarms alerting the user about low blood sugar are ignored. “How useful could that possibly be?” I wondered.

We’re constantly told that, because of the action curve of our rapid acting insulins, changes in pump basal delivery should be calculated for events 30-60 minutes in the future. So how does shutting off my basal drip help me if I’m crashing NOW?

Still, my curiosity got the better of me.

Now, I don’t use a Medtronic pump (Tandem t:slim), or a Medtronic CGM (Dexcom G4), and I don’t even get all of my basal insulin from my pump (my current split is about 57% from my pump and 43% from a single bedtime Lantus injection). So my experience is probably in no way directly comparable to what someone using the Medtronic system would experience. Nonetheless, I started experimenting with what I’ll call MLGS (manual low glucose suspend). I didn’t use it for all of my lows, but there are a couple situations where I’ve found it to be rather useful.

The first is where my bolus and my food may be correctly matched, but are out of step. For example, say I bolused for a meal that’s mostly protein, fat, and some slower carbs, like a steak with sides of spinach and broccoli. Then after the meal, I notice a slow dip on my Dexcom, but I KNOW that once the meal starts digesting, there will be plenty of food to give the insulin I have on board something to do.

Previously, I would have eaten one or two proactive glucose tablets to keep the insulin busy while the steak and veggies get over their stage fright. Now, I’ll just unhook my pump, or set a temp rate of 0 units for 15-30 minutes. And as long as I didn’t way over-bolus, that dip tends to reverse on its own, and I’ve managed to avoid unwanted, unnecessary carbs (delicious though they may be). This is especially useful if I’ve eaten a late dinner, and don’t notice the dip until after I’ve brushed my teeth. I can still get into bed, unhook, and read until I see the CGM line flatten out, then hook back up, without re-fouling my pristine pearly whites.

The other situation where I find myself implementing MLGS is with my serious, all-hands-on-deck lows. You know, the ones where every second spared from their depths means less of a hangover, and more of my day returned to my control. There are two caveats to using MLGS with this type of low. The first is that, since I’m not at my most functional when these lows hit, I’m more likely to use the “unhook the pump” method than the “very responsibly set a temp rate” method. This means that it’s very important to remember to re-attach my pump after I turn the corner on the low. The second is that since disconnecting, even for a little while, leaves me more vulnerable to a rebound high, I always treat these lows with glucose tablets, as opposed to my fridge-clearing binges of yore. I know when I’ve eaten enough glucose to right the ship, but I have to be disciplined enough to trust it and not pile another 50g of future disaster carbs on top.

When I do those two things successfully, my bad lows feel less bad, and I seem to recover from them faster. Can I measure/prove this? No. Do I care? Not really. If it feels to me like it’s working, and I believe it’s an improvement, then it kind of is, even without hard data to verify or explain it.

So even though I’ve never used the new Medtronic MiniMed 530G, or even seen one in person (as far as I know), it has nonetheless made a positive contribution to my diabetes management toolkit, which, when you think about it, is pretty impressive.

*   *   *

Christopher Angell is the founder of GlucoLift glucose tabs (I have a stash of them in my cabinet, and they are so much better than your average glucose tab) and a good friend, diagnosed with type 1 diabetes at the age of 30.  He’s contributed here before, exploring the t:slim insulin pump and both travel and dental woes.  For more from Chris, you can check out the GlucoLift company blog.  To taste test GlucoLift glucose tabs for yourself, you can purchase them from their online store, or write to caring@glucolift.com for samples.  Tell ’em Loopy sent you.

On Sale.

The post-holiday discount aisle at CVS …

"In Case UR Low"  Or maybe "4 UR Hypo" ?

… is perfect for restocking low blood sugar supplies.

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