Tuesday, October 4, 2016

Playing Darts

For the past five months, I've been unconnected to my insulin pump and have been doing daily injections and inhaled insulin to keep my blood sugars in check.

All is well on that front, and at this point I have no plans to go back to insulin pumping in the near future.

As some may remember, I've been on a pump break since mid-May -- mostly because of my need to mix it up in my diabetes management, to motivate myself to get back in gear. But also, because of my frustration and disappointment in Medtronic Diabetes and their business decision-making that I, personally, do not feel best represents the D-Community.

Anyhow, with that being said... I'm still perfectly happy "playing darts."

This is a phrase my Loving and Supporting D-Spouse uses to describe my insulin injections. Whenever I ask for her help in doing a shot in the arm, she jokes that it's time to "play darts."

No, she doesn't actually toss the needle at me.

It's just a fun term of endearment we both use, to keep the daily D-tasks more light-hearted and fun in some small way.

This isn't the first time for me "playing darts," so to speak. The first 17 years of my T1 involved daily injections, and once I began pumping in 2001 there were many times I took a short pump break for various reasons. So, this time isn't new, but it may turn into a permanent break... that's still TBD, and I'm taking it a day at a time.

At the three-month mark of "playing darts" in August, my A1C was just about the same (even though I am suspicious that A1C result and think it wasn't showing the full story).

Since then, I've been bouncing around more often on the BG front and have seen some higher BGs over the past couple months due to my own slacking. But I am happy to be experiencing less unexplained hypos, so that's one for the win box.
 
I am hoping that my next visit in November reflects more of my efforts in getting my A1C down to 7%. To me, the treatment choices I've made over the past several months are the best way to get to that goal.



My Personal Afrezza Effect 

 

Afrezza is inhaled, but I've found over the course of a few months that it's barely effective in the evening hours for me. As a result, I turn to NovoLog fast-acting after dinner-time until the early morning hours, when I am happy to start my inhaled Afrezza as needed.

Over time, I've determined that one 4-unit cartridge is more like 2 or 3 units. But even that's not an accurate comparison, because this inhaled form doesn't work the same way as traditional insulin and it's a complete paradigm shift in getting used to its effects.

One thing I have noticed is that since mid-July (or roughly the three-month mark of starting Afrezza), it seems to be taking me more of this inhaled insulin to achieve the same fast-acting response as it did during the first three months.

I have tested this out in several ways -- with no food on board, very low carb and protein, higher "simple" carb meals, little stress and normal temps without any illnesses messing with me. Even have tried paying more attention to my inhalation technique, focusing on that "deep lung penetration" aspect to ensure I'm getting of the powder into my system properly. All of them have shown the same result: a single cartridge of Afrezza just isn't working as effectively as it once did.

 Usually, within 30 minutes I can start seeing the Afrezza Effect on my CGM. At times, it may take up to an hour to reflect any meaningful change, while at other times it's noticeable within 15-20 minutes. All just depends on the day, time and most likely whether a dog wagged its tail overseas...



That doesn't phase me from using Afrezza most of the time, it's just one more piece of information that I use in determining what's needed to keep my D in check. If that means an 8 instead of a 4 unit, or a couple of them instead of one, so be it.

I'm happy this is part of my toolbox to manage diabetes. It's also nice that my insurance company has gotten over its hesitancy in covering this and my local pharmacy seems to have overcome its ineptitude in access Afrezza. For now, at least.

Trying a New Basal Insulin

For basal insulin, I've been using Lantus twice a day.

A new basal insulin that I have just started this week may help on that front. On Tuesday morning, I began using the extra long-acting Tresiba that's supposed to last for 42 hours. This is something my doctor and I decided would be best, since I sometimes tend to miss a basal dose in the morning or evening, and because with Lantus my BGs spike on the tail-end.

So hopefully, Tresiba works better for me combined with Novolog and Afrezza.

At some point, it may be worth investigating new and exciting options in the smart insulin pen world, but that's something to explore down the road once we get into a new year... we shall see.

Appeal of Latest Diabetes Tech?

 

Whether I ever return to my Medtronic insulin pump is TBD, and despite the very exciting recent news of the first-ever Hybrid Closed Loop being approved, I do not have an interest in what the company offers at this time. Specifically for me, data-sharing is a deal-breaker and when MedT tells me that I have to use the 3+ YEAR OLD model and not the newly-designed 630G or hybrid closed loop... um, no. You lose.

More exciting is the Tandem t:slim X2 pump platform that is now available, and while I have no interest in returning to a pump right now, this is the one that temps me the most -- especially since it works with the Dexcom CGM sensor, one that I trust a lot more than the promises of any MedT tech that are still questionable to me.

With those D-tech points aside...

In the meantime, I'm happy using the darts I have and trying to hit as close to the bullseye as possible when it comes to BGs and staying in range.

Saturday, September 24, 2016

Our Wedding Engagement Newspaper


Happy Wedding Anniversary, Suzi!


As I do every year, I sit back on this special day and re-read the newspaper I created to propose back in March 2003. This full eight-page broadsheet is the one I spent about three months creating many months in advance.

It was quite the task, writing my own stories, editing and designing, selling ads to pay for the whole thing, and recruiting a roll of writers made up of family and friends. All of them keeping the upcoming marriage proposal a secret, of course!

I still remember staying out late at night, telling you they were late nights in my real paycheck-providing newsroom job when in fact they were spent at my old college newspaper stomping grounds putting this paper together.

It was tough, but it all paid off.

This is really a place to post the full newspaper, to keep it alive in digital form online. Sure, I have a couple dozen copies left over from the 1,000 created for that night and beyond. And every one of those eight pages has been framed to display in our home, to display for us to reflect on and for all those who might want to look at them.

Our newspaper hits the 21st century blogosphere, for the entire online universe to see as it may want to (likely clicking on the images themselves, to make them show up in readable sizes...)

The Daily News, Engagement Edition. Created for the proposal event on March 15, 2003.

Front Page

Page 2

Link to Front Page Proposal story. And the Page 2 jump.
Link to Speech story. And Page 2 jump.
How'd we catch each others' eye? Here's a Christmas 2002 account of those initial impressions...
Link to the Page 2 story on Sustaining Surprise.

Page 3

Inside Spread, Pages 4-5

Written by one of Mike's good friends from high school. (Click for bigger image)


Page 6
 Link to In the Beginning, a story of Us on Page 6.
Link to Page 6 story 9/11 emails between Mike and Suzi

Page 7
Back Page (The Ad Page)


Happy Anniversary, my love.

Our story continues, and I'm honored to have the chance to live it with you.

Tuesday, September 20, 2016

An Aching Tooth and Diabetes Stigma

I sat silent there in the dental chair, listening to the new dentist ask an array of basic questions about dental history and overall health.

Of course, diabetes came up.

Earlier, in the waiting room, there were the new patient forms to fill out everything about me. All the health and medication issues, and that typical checkbox for "diabetes."

I checked that box, but wrote in "type 1" on the line almost by instinct. I questioned that even while writing it, because I wondered if it somehow implied I was saying, "Not Type 2, or that kind of diabetes..."

Was I fueling misconception? Was I feeding into the daunting cloud of diabetes stigma that exists in the world?

Deciding it was over-thinking, I ignored my concern and wrote it on the form. And then went about completing the rest of the paperwork before seeing this new dentist for the first time.

Nice enough lady, and I was eager to get to the meat and potatoes of why I was there in the dentist chair: Discomfort in a tooth that concerned me.

As the routine goes, she went through the paperwork quickly and read off some of the health and medical related points I'd filled out. That's where she came to my checked box about diabetes.

"Oh, and diabetes... type 1, so that means you've had it since you were a child and it's OK?"

Red flags went up in my brain, but I hesitated.

"Yes, I was diagnosed at age 5, but you can be diagnosed with type 1 at any age!"

"Type 2s are being diagnosed as children more commonly, too!"

"Why the hell would it be OK at any age?!?!"

"It's not really referred to as juvenile diabetes anymore, because most of us with T1D are adults and more are being diagnosed as adults."

"What are you implying about those diagnosed as adults, or those with type 2 or gestational... no one chooses diabetes!"

But, I didn't say any of that.

I recalled writing "Type 1 diabetes" on the form in the first place, and how I'd ignored my gut instincts to just leave it as "diabetes" because distinguishing the types didn't matter at this moment.

Yep, I had pretty much brought this on.

Then I also remembered: My tooth hurt.

And that's why I was there.

So, I politely agreed with her, confirming that I was diagnosed as a young kid at age 5.

And I didn't say anything. I chose not to advocate, for whatever it might be worth.

Now a week later, I feel guilty for not raising my voice and advocating to that Healthcare Provider when I had the chance. I may not see this dentist again for a variety of reasons, but that just means I lost the chance to clarify something about diabetes that she may not have understood.

Especially in light of the latest research from the big EASD conference in Germany, in which a study showed that half of those with T1D are older than 30 years old. It's not just a kid disease, and the use of the word "juvenile" is outdated and inaccurate in many cases.

All of that makes me feel more at fault for not raising my voice to educate this dentist, especially when these folks are on the front lines in healthcare and can actually diagnose diabetes and help keep an eye (or tooth?) on D-management.

By not speaking up, I am a part of the problem in maintaining the status quo that's so saturated with stigma and misconception.

The Diabetes Community has an aching tooth in how it self-identifies and responds to the public, and that stigma is not far off from being that painful tooth that's in need of a root canal.

In retrospect, my silence feels like I just flooded the tooth with ice cold water and am now feeling the painful sensation that comes from allowing someone to continue not knowing about diabetes.

No, I don't always have to advocate in these types of situations. But then, I can't be surprised when someone doesn't know how things really are about diabetes.

And my tooth still hurts.

Thursday, September 15, 2016

Which Don To Respect?


Remember how I used to occasionally reference the "Don of Rage Bolusing?"

You know, that was mostly a term of endearment for my insulin pump. Even though sometimes, I used it to describe myself from time to time. In those times when I saw stubborn High blood sugars that wouldn't budget with normal correction doses, via my insulin pump.

So, I would click a couple pump buttons and dose a wave of insulin... a rage bolus, as it were (hat tip to Kerri). Since I liked to be silly and named my insulin pump "The Don," thanks to my love for the Godfather movies and TV Show NCIS where Mark Harmon plays the character Gibbs.

Yeah, it was all in good fun. A way keep my sanity while keeping up with this wondrously exciting life with diabetes jam-packed with device juggling, management tasks and mental gymnastics.

Well buh-bye, Don of Rage Bolusing.

I've been on a #PumpHiatus for the past four months. There was never a certain date, and as of now I'm not 100% sure if and when I might go back to my insulin pump. This Multiple Daily Injections (MDI) system using Novolog pens, Afrezza inhaled insulin, and a twice-a-day dose of long-acting basal is working fine for me.



With that, I've hung up my hat (at least temporarily) as the "Don of Rage Bolusing"...

Instead, it's now: 

"The Don of Rage Dosing" 

or maybe, too:

"The Don of Rage Inhaling"

(Hat Tip for my Type Awesome Spouse for noting this distinction.)

We'll see what happens next, and which Don ultimately wins out.

Either way, there must be respect.

In the meantime, I'm kissing the ring and trying to control the rage as much as possible. While respecting that fact that it's my diabetes calling the shots and "settling all family business" relating to my blood sugars, more than anything...



Thursday, August 25, 2016

Driving A Car on Dangerous, Worn Tires

Hello again. Blue Care Network.

It's me again. The guy you've added to "The List" on potential rabble-rousers, those you sound warning bells on whenever their name pops up in the call que or a written communication comes in. Yep, that guy.

We've done this dance before, you and I. Remember?

Letter to My Insurance Company: I'd Rather Not Die Today

If My Diabetes Devices Were Parts of a Car...

My inhaled insulin Rx request that you initially denied, and then changed your mind on. The other battles that I didn't care to continue, because even though it was a question of improving my health, it wasn't worth my sanity.

Yet amazingly, you don't seem to learn the lesson. Even though it's clear you have a pattern of "deny first" and thoughtfully-consider the request later on appeal, the cycle continues.

Alert your supervisors, because you're all in for another round.

A few weeks ago, my doctor's office called in a prescription for a new type of basal insulin. We had met earlier that day in his office, discussed my diabetes data and all of the medications I've been using. He and I both agreed, after analyzing my data and determining that my current and past insulins were not working effectively to achieve the desired outcomes that a change was in order.

We decided that Tresiba was unique, doing something that other insulins did not. It had good customer feedback from those who've used it, and the science shows it lasts 42 hours instead of how long the competing Lantus and Levemir last (sometimes not even the full 24 hours they are labeled for). Because of my specific situation, my doctor agreed this would have a better chance of lowering my glucose variability, stopping those dangerous Lows that I have been experiencing, and even improving my A1C more than we've been able to accomplish to date.

I was excited to find a medication that might actually help keep me healthier and limit some of the scary hypoglycemia and hyperglycemia I have been seeing.

Unfortunately, Blue Care Netowrk denied that prescription claim.

In your denial letter, you specifically stated:
"Coverage is provided in situations where the member has failed to achieve adequate blood glucose control with use of both Lantus AND Levemir for at least three months each. Coverage cannot be authorized at this time. The member must still try and fail Levemir for at least three months to meet coverage criteria."
Holy, hell. Did you seriously tell me to "try and fail" for an effective 6 months before starting a medication that my physician and I both agree has the likelihood to improve my health????

Wow.

That is very concerning language, on so many fronts. It's like you telling me to continue drinking toxic water before you'll give me access to bottled water. "Hey, data shows your current water is not good for you, but we want you to use that for three months. AND THEN, go next door to the house that data shows also has less-than-ideal water, and use that for three months. ONLY THEN, will we make sure you have access to clean bottled water that's shipped in from outside the city."

Seriously, Blue Care Network. That is what your official denial letter says to me.

Here, let me put this in terms you may be able to better understand. Maybe a car analogy will help you better grasp the foolishness of your decision-making here:

If My Diabetes Management Was a Car... 

I currently own a car, and you've paid for the wheels and gas and some of the engine work that's been done on this during the past 8 months.

However, when I drive this car on the local side-streets or expressways, it's a bumpy ride. My car shudders, sometimes resulting in my loss of control of steering and acceleration.

In consulting with my expert mechanic, who examined the body of my car and spent time looking under the hood, he advised that I needed 4 new tires.

Realizing that this is a serious problem that endangers not only myself but other people on the road, I've decided to address this issue and buy new tires. That is what I've asked for you to help on, since you're in the business of helping your insured customers achieve better outcomes.

Instead, you questioned my mechanic's orders. You relied on the textbook answer that was written years before my current car was even manufactured on the line, and was written based on outdated auto mechanics.

Your logic: I should continue driving on what I have now, for at least three months. And if that doesn't work, I should not listen to my mechanic and I should rotate the tires in hopes they'll magically heal themselves and allow for a smoother ride. By your reasoning, that tire rotation is a "clinically equivalent" option to buying new tires.

"Try and fail," is the language you used in a denial letter. You also talked about cost management and how this is a basis for your decision-making.

In the meantime, I wonder what happens if my car stutters and stops on a busy interstate? If I am seriously injured in an auto accident as a result of my car not functioning properly? If I am unable to work and be a productive member of society, as a result of my car malfunctioning because you denied to fix it based on the expertise of a mechanical expert who has actually looked at my car and warned of these potential issues?

I doubt you'd be quick to cover those above scenarios, probably because of the same "cost containment" rationale. And I wouldn't be surprised if you offered up language in denying those expensive claims, along the lines of "You should've fixed this before it became dangerous."

No, Blue Care Network. You are the one making dangerous decisions here.

You are forcing me to drive down the road on dangerous, worn tires. I'm riding on danger, because you won't do what you're supposed to in helping me afford the best treatment that will keep me safe.

My physician has offered medical advice based on my patient data, and we have determined the best course of action. We understand that you're concerned about containing costs, as we all are. But we also know that this particular Tresiba Rx is the best option, and it's different than anything else out there. That's why we have asked you to cover this medication, something that isn't "clinical equivalent" to anything else but has the potential to keep me safe and healthy.

We have already started the appeals process for this particular prescription, and I trust based on past experiences with BCN that this will be overturned and approved sooner, rather than later. For example:
  • The nurse who who told me that (after I had complained about my Dexcom CGM sensors being denied and gotten Huffington Post coverage on that), she was instructed to take a second look at my Dexcom CGM supplies, which had been denied. And learned upon re-examination that "Oh, you were already using this device, so that's now been approved."
  • That you approved my Dexcom CGM sensors in February, but in May you denied the Receiver and Transmitter that is needed to operate this CGM system. As I wrote before: If My Diabetes Devices Were Car Parts, it was like you OK'd the 4 wheels and steering wheel, but not the body of the car needed to use those other parts.
  • Within an hour of appealing a denial related to my Lantus insulin (you know, the one you're now insisting I "try and fail," my Rx was approved. 
  • You had denied my Humalog originally because I needed to first try the competing fast-acting insulin Novolog. As I'd never used Novolog before, I opted to not fight on this and to try that insulin. Yet, amazingly, I learned that after I'd called my local pharmacy to fill the Novolog, you went ahead and approved the Humalog insulin anyhow -- despite how I had not met the "clinical criteria" you had told me to follow.
  • In one of those above situations where I was fighting BCN and appealing a denial, two of the BCN representatives I spoke with on the phone specifically told me that they weren't permitted to give me information about my own medical care or the decision-making on my claims, because I was not the prescribing doctor.... One of those reps had the mind to throw HIPAA privacy at me as a reason behind this BCN policy... (Yes, really!) A few more phone calls up the chain of command resolved this, with apologies from a supervisor.
All of this proves to me that your decision-making process is, by design, aimed at denials and making it more difficult for patients and providers to obtain coverage.

No, I don't think insurance companies should be in the practice of blindly approving anything and everything we ask for. Yes, there does need to be some oversight and cost-analysis weaved into this review process. However, even when physicians follow your clinical criteria to the letter, and submit documentation showing so, you have a policy to deny first.

My hope is to highlight the arbitrary nature of your policies and decision-making, to help you understand that they simply don't make sense and go against both common sense and medical standards.

To be clear, I'm not worried about myself, and obtaining this particular medication. My concern is more about the pattern of denial your insurance company seems to have. I'm troubled by that trend, and worried about other patients. Those who don't know that they don't have to take No for an answer, but they have options to appeal.

My own doctor has told me of situations where he has Rx'd particular items, only to find out at a patient's next visit that they ended up not ever using it because of an insurance denial. They either decided they weren't able to get coverage for that medication, or they weren't interested in appealing for what they needed. I can't even imagine how many doctors out there have a blanket policy within their practices of not appealing, simply because they don't have the time or resources to devote to that process.

That's wrong, in my opinion. And I believe it goes against the very definition of what you profess to be all about, in your mission statement on healthcare coverage for people who need it.

With that, I leave you my ask:

Please, listen to the doctors who are writing these prescriptions. They know what they're talking about, as physicians, and we trust their medical advice.