Never ever ever ever change your insurance

In a world where dealing with insurance companies feels like navigating a labyrinth of confusion and frustration, my personal saga with my new insurance provider takes center stage. From late notifications to deactivated accounts, debt collection dramas, and the hunt for a diabetes-saving angel, my journey encapsulates the absurdity and gravity of the insurance conundrum.

Act 1: The Late Arrival It all began when I switched to my new insurance on July 1. However, the insurance information was fashionably late to the party, only deciding to function properly around July 5. While they may have missed the fireworks, my stress levels skyrocketed as I frantically tried to inform my medical providers of my new coverage.

Act 2: Deactivated Dreams Amidst the chaos, my durable medical equipment company seemed to take "out with the old, in with the new" quite literally, as they deactivated my account without a second thought. Bills piled up faster than they could deactivate my account, and I found myself in a Kafkaesque battle between claims, phone calls, and inexplicable debt collection notices. (Despite three phone calls to pay my bills—only to be told there was no amount owed—I received a debt collection notice!)

Act 3: The Diabetes Angel In dire need of continuous glucose monitor sensors, I embarked on a quest to secure them. Extending the life of sensors meant less-than-ideal readings, prompting me to make a plea on social media for a diabetes angel. Lo and behold, a kind stranger emerged from the digital ether, sparing me the agony of sensor-less days. Lesson learned: social media can be a guardian angel hub for the 21st century.

Act 4: The Phantom Approval Just when things seemed manageable, a new storm brewed on the horizon. My trusty insulin pump was being discontinued, and the insurance dance began anew. Denials, chart notes, and doctor-document-ping-pong ensued. The pharmacy plan demanded a prior authorization. The doctor insisted the pharmacy needed to start the process. The pharmacy plan said they faxed the request 10 days ago for chart notes. I needed to come in for an appointment so they could send new chart notes. By the time that happened, the prior authorization was denied and a new one needed to be requested. It was a "catch-22" situation that only Joseph Heller would appreciate.

Meanwhile, I have one pod left, meaning that if I don’t get the supplies in the next three days, I will be completely and totally screwed…or will need to send out another plea to Randos on the Internet.

While it's easy to poke fun at the exasperating antics of my insurance company, the toll it takes on my health and well-being is far from humorous. Navigating through their bureaucratic maze has consumed hours of my life, precious days with uncooperative diabetes devices, and added anxiety to an already demanding situation. I guess it was my fault for having the audacity to switch insurance plans.

And as I await my shipment of continuous glucose monitor sensors, I'll be holding my breath, fingers crossed, and a spare sensor from my newfound social media diabetes angel just a text away. After all, who needs functional insurance when you've got a network of online heroes?

Disclaimer: The blog post content is for creative and entertainment purposes only and should not be considered as professional advice regarding health or insurance matters. Always consult a qualified professional for guidance on such matters.

Bad customer service or negligence

 Part one: phone tag

The first calls come in early February. My insurance changed over on Jan. 1, and my DME supplier is calling for a new insurance information. I believe I gave them my new insurance number. For reference, the medical supplier is J&B Medical. The insurance is a Blue Cross Blue Shield PPO in the state of Michigan.

Mid-April: I’m now out of supplies. I really need to figure out what’s going on with this supplier. I start calling the company. I give them my insurance number several times over. Nothing seems to move. 

Relevant and frustrating piece of information is that I went to a doctor’s appointment at my endocrinologist on March 22. I was literally in the office on time when the receptionist told me the doctor had cancelled my appointment. The doctor was very strong willed about this, citing that she could cancel it because I was late, because the appointment details ask that you arrive 20 minutes early. I’m still unsure of the actual policy. I filed a customer service complaint and I’m pretty sure I’m now getting iced out. 

May 2: I am totally out of supplies and have no way to get any. I start calling the medical device company regularly. I have the same conversation over and over with different people which includes some version of this:

Did your insurance change?

Yes, I have already given this information several times.

It seems like your insurance hasn’t been verified yet.

Okay so go ahead and verify it. 

Great I will take care of this, I will call you back within an hour. 

One hour later… crickets. 

May 10: after 69 minutes on the phone and talking extensively with a supervisor named Rico, I am assured that it will be dealt with. Rico tells me that he has filed a formal complaint within his company and the policy requires that I get a phone call back in 24 hours. 

24 hours later… crickets. (Verifies by my phone records.)

May 13: calls totalling 15 minutes and 33 minutes… I finally get some information: the insurance was verified. According to J&B the insurance requires chart notes from my doctor in order to authorize CGM sensors. The chart notes need to be from within the last six months. Unfortunately the only appointment I had within the last six months was inappropriately cancelled by my doctor. I am also almost out of paid time off days, partially due to the day I took off in order to go to that appointment got cancelled. Also, as a teacher it’s very challenging to take a day off at this time in the year. It’s super busy and a lot of people are out due to Covid and flu. 

They also tell me that I received a phone call from a supervisor name Victoria the previous day. Phone records indicate no such call. The current supervisor I’m on the phone with is being very confrontational. Yikes. 

So here I am, several months later, with no supplies and I owe another diabetic two sensors that I’ve borrowed so far. I have no clue if I’ll be able to make an appointment any time soon with my endocrinologist. 

They want diabetics to do what?!?

If you have any close friends who are type 1, you must know that diabetics are hoarders of medical supplies. They may not be hoarders in any other aspect of their lives, but, to a type 1 diabetic, a stocked cabinet full of sensors, pump supplies, test strips, lancets, batteries, etc... is a source of comfort. We aren't (all) trying to screw over the insurance companies, we just want to have enough supplies on-hand to feel like we're not going to die.

Let me be clear: these supplies are necessary to live. I would have to check into a hospital if I didn't have access to an insulin pod for even one day.

Apparently, insurance companies (mine, at least) have implemented a rule that the patient has to be down to less than 10 days' worth of supplies before reordering. WHAT DIABETIC IS COMFORTABLE WITH THAT FEW SUPPLIES?

While I understand the rule--they are trying to cut down on waste and hoarding--I'll give you a few reasons why the rule is stupid.

1. It often takes a few days to get new supplies for unforeseen circumstances, such as needing a new form filled out by your doctor (pre-authorization, medical necessity, etc), a prescription renewal, or some other bureaucratic snafu. To give you an idea, a medical necessity form is something my doctor has to fill out to verify that yes, indeed, Laura is still diabetic.

2. People travel. If you are going somewhere for 3 weeks, you need to bring plenty of supplies with you and not be out of them when you return!

3. It would give me heart palpitations to have to wait until there is ONE sensor left in my closet before I can order more (one sensor = 7 days). Besides, I'M THE ONE USING MY SENSORS FOR TWO WEEKS AT A TIME SO I NEVER RUN OUT. And that's my right. Insurance still has to cover me for one every week.

4. I can never feel secure that I know where my next bottle of insulin is coming from. Especially with an Obamacare repeal on the horizon, I don't feel confident that my supplies will be available and covered because of all of the paperwork and logistical hassle involved in getting supplies when something goes wrong. I don't trust insurance companies I have enough experience with insurance companies to know that they are capable of some really unsavory practices, like recategorizing pump supplies to fall under "prescriptions" so they can put an absurd annual cap on them, leaving the patient high and dry.


Dear insurance companies,
It is bad policy to put patients in situations that they are deeply uncomfortable with, and in which they are most likely to lie for survival.
Sincerely, 
Diabetics


Lastly, I'd like to share this second-hand story I heard at the medical supply store.

A nice diabetic lady, 77, type 1 for 50+ years, is sitting at home when she hears a knock at her door. Being the nice lady she is, she opens it.

A sharply dressed woman stands at her doorstep. "I'm from the insurance company," she explains. "Can I come in?"

"Sure," says the nice old diabetic lady. They sit down on the couch in the living room. The insurance woman asks a few questions about the lady and her diabetes. Then, she asks if she can look in her fridge to see how much insulin she has in stock. SHE STRAIGHT UP ASKS TO CHECK HOW MUCH INSULIN THE NICE OLD LADY HAD IN HER FRIDGE. 

"I think it's time for you to leave," says the lady, in her most polite voice.

Moral: Never let the insurance company into your house.

Please Don't Make Me Go Back to Pre-Obamacare!

Great. Now I'm forced to write this stupid post because of stupid Donald Trump's stupid victory.

I think I'll start this post off with a story about how lame and ill-informed anti-Obamacare people are. I was in Washington, DC for a job interview, and I happened upon an anti-Obamacare rally. So I decided to infiltrate and ask some questions of the demonstrators, with their signs talkin' bout constitutional rights being violated and all that.

One middle-aged white guy (surprise surprise!) that I engaged got to hear a bit of my story. "Without Obamacare, I'd most likely be totally broke, if not dead," I told him. "You don't look unhealthy," he responded. "Yeah, that's the thing, healthcare is more complicated than looking or not looking healthy."

Here are my worst stories from pre-Obamacare:

1. The time I couldn't get insurance in California in 2004/5 because I was working for a temp agency and no insurance company would cover me. I had landed a REALLY good job working at McGraw-Hill on various educational projects. I hadn't even graduated college yet, so it was a really amazing opportunity. Unfortunately, the temp agency that I was technically working for didn't offer benefits under a group plan, and they informed me that I would just have to get an individual plan. So I called. And called, and called. Kaiser, Blue Cross and Blue Shield, they all literally said, "We don't offer individual plans for someone with type 1 diabetes."

But it gets kind of worse. I went to the county health department and talked with a social worker there. I was in tears as she told me that there aren't any programs for a person my age (not under 18 or over 65) with no kids. She said I could go to the public health clinic and they would see me under some county program.

My experience there is that I couldn't see a doctor more frequently than every 3 months, including diabetes visits. I got 15 minutes MAX with the doctor. When I needed him to write me a prescription, HE LITERALLY WROTE "INSULIN" AND "TEST STRIPS" ON A PIECE OF PAPER. (In case you are wondering, this is a useless way to write a prescription.)

Lastly, and worstly, this county program would only allow me to use Regular and NPH insulin. If you know anything about insulin, this is the kind I was taking back in 1996, and insulin has gotten MUCH better since then (more fast-acting, fewer peaks and valleys). No self-respecting doctor would prescribe it today. Unsurprisingly, the program also considered the insulin pump, a device that had already been around for decades, to be "experimental."


2. The time I went to grad school at Brandeis and got on the university coverage that paid for my prescriptions through mid-February each year. This was actually really bad, if you understand anything about insurance policy.

In Massachusetts, if you don't have a job, you can still get insurance through the state-sponsored program. It is REALLY GOOD. I got to see a qualified endocrinologist at Mass General, all insulin was modern and paid for, and amazingly, all of my diabetes supplies, including pump supplies, were automatically delivered to my doorstep each month like clockwork.

I had moved to Massachusetts in January and was starting grad school in June. Filling that gap in coverage was much-needed. So you can imagine my dismay when I was being made to switch to the plan offered by Brandeis. Here's why it was so bad:

There was a yearly max on prescription benefits of $2,000. That wouldn't have been a problem if not for this: the plan had recategorized insulin pump supplies (reservoirs, tubing, etc) as prescription benefits. This is unprecedented. Every other plan I have ever know deems these supplies to be durable medical equipment (the same category as prosthetic limbs) and is usually covered 80-100%. They are really expensive supplies.

So, doing the calculation accounting for the life-saving prescriptions and supplies I needed, the coverage would have gotten me through mid-February of each year. From there on out, I would have had to pay for everything out of pocket (about $1150 each month). Luckily my program was only 15 months long, and I had hoarded enough supplies to (barely) get me through. Diabetics are hoarders for this very reason.

Here's my message to the Trump Administration and to Congress:

Without Obamacare, insurance companies will pull off sketchy shenanigans like I have described: they won't cover those vulnerable populations that need it most, and even if they do, they might recategorize supplies to their bottom line.

The best take on breastfeeding in public I've heard so far

In response to a PopSugar article called "Dear Breastfeeding Moms, Is It Really That Hard to Cover Up?" one facebook user shared this poignant response and social commentary (reposted with permission). A longer version can be found here.

First lesson: Lactation is an innate part of reproduction. Barring medical complication, lactation is the next step after delivery. At times induced (which is so awesome I can't even... But I digress) the point is, lactating may be innate, but nursing is not. Nursing is learned activity. Learned. Contrary to myth, women aren't born with the instinct to know exactly what to do. Mom and child are getting the hang of this together. Primates (that's us) require observation and exposure for continued success and sustained efforts. Normalizing is vital. Seeing nursing moms and children matter. It's empowering and necessary. The choice to cover should only be preference of mother/child. Never infringe on their comfort.

Second: Modesty deals with arbitrary sexist standards birthed from coverture. There is nothing indecent about feeding a child. If you see a child nursing and modesty comes to mind, the issue is yours. And sure, we sometimes view breasts sexually. Welcome to the amazing world of a human body. Where we use our mouths and hands sexually too. I certainly hope you aren't thinking of those as sexual when kissing and holding a child. Think about it.

Third: Those of you asking for your discomfort to be respected, pay attention: My rights to nurse my child without cover DO outweigh your nonexistent right to not be offended. This is fact of law. You hold no such right. The public square is for the public. There are more than enough offenses we all must tolerate, including bigoted, uneducated, ignorant ones. Alas. Learn the difference between what is a right under law and what isn't.

I'm a little confused why you think I ought to hold in high esteem the ignorant aversions of a stranger in regards to nursing? Of course I won't respect that kind of ignorance. That person's offense is not my business or issue. And I'm certainly not going to cater to it over the right of my child to eat without a cover over his face or the breast he is feeding from. Why would I? Why would you even expect me to?

Should we have respected the aversions people had to others drinking from the same fountain? Should we have said "oh, respect their bigotry, their opinion matters too". Of course not. Again: Of course not.

I am not going to respect the view that women and children be treated as second class citizens that are shamed under cover into hiding because an idiot has an aversion to seeing a human mammal feed from a human mammary gland. Never.

And quite frankly, you shouldn't either.

Fourth: Images are empowering. They matter.

We live in an age where rants of TMI is the norm. We post pictures of our pets, our food, our shoes and yes, we share images of our families too. But when women share photographs of the moments they share nursing their children, scorn rips defiant calling women exhibitionist. It shouldn't matter what motive a woman has, but if we needed a reason, there are plenty of them. The images are empowering to many who are looking. They normalize breastfeeding as just another memorable moment a parent is having. And they encourage those who don't understand why critics didn't just keep scrolling.

Fifth: Human mammals require milk beyond infancy. Milk is a developmental requirement custom to species. Jaws alter, cheek fat diminishes, milk teeth drop, mammals wean. Until then, it's nonsense to suggest there would be anything weird about a human mammal expressing human milk from human mammary glands. What's weird is that we'd drink milk from another species after the wean. But alas, cheese. The age of weaning is a spectrum, not an arbitrary line. And telling my child he is weird because your child didn't nurse through those years is absurd.

Finally:
If you're concerned about children being exposed, perhaps your answer is to teach them anatomy.

Bed-sharing: What your pediatrician won't tell you

Here's how the typical American story goes: Mom and dad take baby home. When nighttime rolls around, they put baby in his crib and head to their own bed. Baby gets hungry some time later and starts stirring. He starts smacking his lips, moving his head around looking for mommy's breast. He doesn't find it and starts to wail. This pulls mom (and dad) out of sleep, and mom drags herself to go pick baby up and try not to fall asleep as she feeds him. She will repeat this several times a night for months.

What ends up happening is that moms will fall asleep with the baby in her arms on the couch, in the glider, or in her bed. This can be dangerous if the baby slips out of her arms into soft couch cushions. But there is an alternative. Safe bedsharing, or as this article calls it, "smart bedsharing." I'm convinced that if you took out all of the unintentional bedsharing (any instance of falling asleep with baby in an unplanned, unprepared way), the data would show that intentional bedsharing is as safe as "safe sleep" (ie: putting the baby on his back in an obstacle-free separate space).  

I had already made the decision to bedshare with my newborn daughter by the third day she was home. Like most new parents, I was under the impression that the baby has to be in her own space. I tried to put her down, but she wouldn't cooperate. She simply slept best on me. For the first two nights, I slept on the couch the whole night with her on my chest. (Read: very dangerous!)

Then I hired a post-partum doula. She, of course, would not advise me to bedshare. I'm pretty sure it's a liability issue. Nobody will advise you to do it. Yet, every parent I talk to says that they bedshare(d) with their infants, whether or not they intended to. Many sheepishly admit they did it, adding that it's inevitable.

If bedsharing is inevitable, then can we please talk openly about how to do it safely and its benefits? And while we are being real, let's admit to ourselves, collectively, that far more infants die in car crashes from sleep-deprived parents on the road than die in bedsharing accidents? Yet, we aren't really telling parents to stay off the road.

I'll start by saying what I love about bedsharing:

1. It helps establish milk supply. With the baby next to me or sleeping on me, I get plenty of skin-to-skin contact with her. This helped to establish my milk supply in those early days.

2. Significantly improved sleep. I wake up when she starts to get hungry, rather than waiting for her to be all-out crying. This means that everyone gets better sleep -- mom, dad, and baby (and any others within earshot).

3. Baby gets comfort from sleeping next to mom. She also gets cues from mom, such as regular breathing.

4. Varied sleeping positions. After she nurses, I'll position her on my chest or on my stomach so that she can be on an incline after feeding -- helping her get burps out. This allows her and me to get right back to sleep without the discomfort of bubbles in her belly. 

5. Both mom and baby love snuggling. This is a scientific fact.

In contrast, putting baby on her back in her own space results in poor sleep for everyone involved (at least in my family), more gas and discomfort, less skin-to-skin, no breathing benefits, and it's less fun for both mommy and baby. But it is reportedly the safest position to reduce SIDS and suffocation deaths.

Here's the truth: people will end up bedsharing. But if it is not recommended or talked about, then parents will not do it intentionally and thus not safely. I mentioned to our pediatrician that I was bedsharing with our daughter, and told her that I was fully aware that the recommendation was to put baby on her back in her own space, but that I had already looked into the matter and had come to a decision. This would have been a great opportunity for the doctor to educate me on making bedsharing as safe as possible. Instead, she went on and on about the guidelines for safe sleep, trying to talk me out of it.

Back to our doula: After recognizing that safe sleep guidelines all recommend back sleeping, she worked with with me to make the bedsharing environment safe. We inspected the mattresses in my home and determined the best one for baby (on the firmer side -- not the pillowtop one). We made the bed with a tight fit with jersey sheets. We pulled down the blanket to mid-bed. We chose a small pillow for me that would be placed under my head, but with my head at one end with the other end away from baby. We tried out several positions -- baby facing me, facing away, on chest, on stomach.

Guidelines for safe bedsharing:

1. Mattress is firm. Pillowtop or memory foam mattresses should be avoided. Feel a crib mattress for comparison. 
2. Fitted sheet is tightly tucked so that there are no folds. 
3. Minimize blankets. I use the top sheet plus one blanket. 
4. Keep blankets at waist level. You can wear a long-sleeved shirt for warmth up top (though you may want to wear a nursing top). 
5. Place baby on her back. I also place the baby on her side facing me, but you will have to determine your level of comfort. 

Pretty in Pink: The real challenge for gender stereotypes

My daughter was born on the same day as the princess in England. We chuckled at the coincidence and promised our daughter that she would never be a princess. Instead, she would be free to make her own choices and pursue her own passions, whatever they may be. And she will certainly be able to dress however she pleases. When I was a little girl, I used to wear shirts with bugs or dinosaurs on them. While I recognize that my influence may not be stronger than the influence of her peers, I secretly hope that she will not be one of those pink-clad, princess-obsessed little girls who is endlessly fascinated with sparkles.

Lucky for me and parents like me, the feminist movement has brought us this: Princess Awesome. It is a clothing company that had wild success getting funded through Kickstarter. The HuffPo article headline read: Moms Launch Stereotype-Bashing Clothing Line That Challenges What It Means To Be 'Girly'. Full disclaimer: this project was started by a former colleague and I wish her great success. I do, however, challenge that it is "stereotype bashing." I think the prints are cute (flowers and ninjas, adorable!), but they are still, alas, dresses. And it is still, alas, called "Princess Awesome."

Our society is fully ready to accept little girls wearing dresses with ninjas and math symbols. What we aren't ready for is little boys wearing dresses and flowers.

My husband and I noticed this trend when opted to wait until our child's birth to discover her sex. We thought it was medically irrelevant during the pregnancy, and my siblings had all done the same with their first child. When we received presents, we noticed a curious thing: folks were willing to give outfits that were clearly meant for boys, but nobody would commit to giving a more traditionally "girly" outfit.

Why are we culturally okay with little girls wearing footballs and trucks, but we would never see a little boy in a frilly dress?

I found an online discussion in an online forum on BabyCenter, where all walks of life come together to discuss everything, and I mean everything, about babies. A user poses this question:

"Can anyone come up with a good reason why dressing your boy child (infant toddler or older) in pink, frilly, flowery cloths is not common practice?" She goes on to say that, while she considers herself to be free of gender biases, especially for infants, she doesn't think she could bring herself to dress a little boy in girly clothes.

Someone responds: "Pink is fine on boys if the clothes have the boy style to them. Flowers...not so much. It just doesn't jibe well for them. It's not biased just can't see a boy with a flowered shirt. And frilly on a boy? Nope can't do that either."

But this response doesn't really hold up.  For one, our perception that flowers and pink are girly is entirely cultural. There is nothing masculine about blue and feminine about pink, and not all cultures even share this view (read more here). For another, it's not even really possible to tell whether babies are male or female once they have a diaper on.

So here's my challenge to anyone who considers him or herself a feminist: Instead of lauding ideas such as dressing up girls in math-print dresses as progressive and "sterotype-bashing", let's really challenge what we are willing to accept. Ask yourself: would you put a dress on a little boy? If you saw a little boy in a pink tutu, what would you think?

I'll end with a story. A little boy wanted a princess-themed birthday party when he turned five. His parents didn't see any reason why they shouldn't oblige his wishes, so they did it. By the time he was seven (when I met him), he was so embarrassed about the party that he was unwilling to talk about it. That's what needs to change.

I can't beleive my insurance company is paying for all of this!

This is kind of the anti-post. I have to say that I haven't had much to complain write about since I've been on the University's staff health care plan. It's really quite good coverage, which I guess highlights the huge difference in quality of life that an insurance plan can impact.

I will complain about the state of maternity leave in this country in the next post (promise). 

Here's the latest: I'm now 3 weeks post-partum. My gorgeous sleeping baby is sleeping in the baby carrier strapped to me as I type this. Throughout the pregnancy, I was part of a few groups online for fellow type 1s who are pregnant or moms. There were some crazy stories about the absurd amount of money they had to pay up front to the OB department in order to receive care.

Several women report having to pay $2,000 to $4,000 for their OB care, which doesn't necessarily include all charges, such as lab work, specialists, etc. 

One woman reports, "We pay out of pocket up to $4k I think, then 20% of the next $1k then 0% (in-network). I believe that I'll be paying whatever the standard "high risk" CS delivery is but it's pretty confusing what's included."

Another says, "I had to pay my OB before week 28. 3,200 dollars [sic]... Not including [sic] pediatrician, hospital and anesthesiologist."

So you can imagine my anticipation when I received the hospital bill for my pregnancy. Wait for it... $14. That's it. The rest was covered. And if we are being accurate, the $14 was for two guest meals for my husband while we were in the hospital. I kept asking, during my 40 appointments over the 40 weeks of pregnancy, if I was going to see a bill. I thought that each OB visit qualified as a specialist visit and cost $30 copay. This would add up to $1200, which I was prepared for. 

So you can see how this surprised me, especially after getting unexpected bills quite frequently over the years. 

Good job, PremiereCare/University of Michigan. Now, if you could please work on maternity leave. 

MedEQUIP partially reedems itself; Dexcom comes down a peg

I blame my insurance for not being cool and amazing and doing all it can to make life easy for someone with a chronic illness. Let me explain. My insurance doesn't allow for automatic refills (ie: they just autosend you your supplies every three months). I was getting auto refills when on the AMAZING MASSHEALTH PLAN that will live on in my heart and mind as the single best plan I have ever been on. They checked the insurance every month and shipped me supplies if all checked out. The other time I had auto refills was on Kaiser. They did NOT check my coverage for changes before shipping the supplies, and I ended up with a $780 bill (of course I disputed it and WON, because I am the dispute mistress!).

So this insurance plan, which is amazing in almost every way--trust me, I read through the Benefits document front to back, doesn't allow for automatic refills. They require that you call the company (or the company calls you, before shipping out the supplies. This would be fine if the company did it (they are, after all, making money off of this service). I'm less likely to remember to refill my supplies on a regular basis and end up running out and going without a sensor, or worse, without pump supplies, until the new supplies arrive. I'm sure this is why the insurance company does it: to save money when people like me forget to refill regularly.

I was SO FRUSTRATED with MedEQUIP for not calling me when my supplies were up for refill. It happened many times, and they always CLAIMED that they did call me. Uh, in that case, there would be a missed call on my phone, and anyways don't just call once!

Pro tip: Type 1 diabetes DOES NOT GO AWAY. I will always need insulin and supplies. Why the eff do I have to continually deal with refills? There should be an exception when it comes to chronic illnesses.

Anywho, I went through this whole thing where I switched my CGM supplies ordering to Dexcom. They assured me that they would call me every 3 months to get my refill authorization. They have a vested interest in getting more products out the door, right?

I trusted them, but ONCE AGAIN found myself out of sensors, right before heading to Boston for a long weekend. This was not going to be good. I called Dexcom to ask "What the hell?" and the ordering department told me, "Oh, no, we don't call customers to refill orders. We have a lot of customers! We do have an auto-refill program."

SO, who did I have to turn to for last-minute sensors? That's right, MedEQUIP. I called and begged them to refill my sensors right away, as I was heading to the airport and had literally 15 minutes to spare. They totally came through! I swung by the office and grabbed the sensors, and made it in time for my flight. Still, I will stick with Dexcom, just knowing that I will have to call my sensor order in every three months (MedEQUIP would make me do it every month). Dexcom also sent me two free sensors to make up for the loss in my overflow. But, I will no longer shake my fist angrily every time I drive by the MedEQUIP office.

Lumped into a category: Pregnant and diabetic

It's been 26 weeks of this new category: pregnant and diabetic. I've heard others who are a bit further along say they don't know how much more they can take... that they are getting treatment from their insurance companies and medical team that are hindering their ease of diabetes management.

I've been a bit frustrated by the medical industry's lack of interest in accuracy. I know that there have to be broad designations, but there MUST be room for accuracy! Type 1 diabetes + pregnancy = high risk. Period. No way around it.

I've been doing OK with my blood sugars. My A1c hovers around a 6% (the low end of where you start seeing complications). I haven't had too many readings over 200, and only once over 250. I've been exercising 2-4 times a week, and have been taking my vitamins and eating my veggies. My eyes are fine, my kidney function is excellent, my lipids are amazing, my blood pressure and pulse on the healthy end of the spectrum... My doctor agrees that my blood glucose readings give him no cause for concern.

And yet, I still get designated a high-risk pregnancy. Not that I particularly mind; I get far more ultrasounds than the average woman, I've had growth scans every month, an echocardiogram to examine the baby's heart, and I've been sending my numbers to the doctor every week and working with him to adjust my rates. I kind of like the attention. But I don't like the inaccuracy.

This could come to a head when it comes to deciding when and how baby comes into the world. The doctor already told me that he would like to induce labor at 38 weeks. This article explains why it's best to wait until at least 39 weeks. Of course, I would like baby to be as healthy as possible, and come into the world when he or she is ready.

If there is sound medical reasoning for inducing the baby at 38 weeks (based on actual information--like how the baby is measuring, how my blood sugars have been, etc), then I will of course consider it. But if they are saying this because on average, diabetic women (lumping type 1, type 2, and gestational in one category) deliver large for gestational age babies, then I would hope that they would seek to me more accurate when dolling out medical commandments!

Corporations are people too: MedEQUIP tries to save face through repeatedly lying

As I complain to my husband about the much-hated, much-talked-about-in-our-household Med EQUIP--the medical supplies company that my insurance company forces me to use--he reminds re, "Remember, corporations are people, too."

Apparently they are, because this company would apparently rather save face by lying repeated (verifiable lies, mind you), and hanging up on their customers, rather than actually solving a problem or having good customer service.

Here's the latest: I get a call roughly every month from MedEQUIP asking if I need my Dexcom sensors. "Yes," I tell them every time, "Still a diabetic." Some months they are a few days late in calling, some months they are a week or two late. (Why not just automate the process? We'll get to that later.)

This month, after coming back from a trip, I went to grab a new sensor, but I didn't have any left! Odd, I thought, I didn't get a refill call yet. So I called The Dreaded MedEQUIP (they get an angry fist shake every time I drive by their office), and they told me this very verifiable factoid:

"According to our notes, we called you on October 13 to refill the order."

Here's the thing--my number is a GoogleVoice number and every call, missed call, voicemail, and text message can be looked up in my GoogleVoice inbox. So I looked. Oct. 11, missed call from my mom. Oct. 16, voicemail from my dad. October 13: NOTHING.

They simply lied to me.

I was pretty stern with the woman, letting her know that this was not acceptable and telling her that it is seriously not OK for me to be off my sensors (bordering on rude, but still within the bounds), and next thing I know, I'm HEARING THE DIAL TONE. Lady hung up on me! I called back, but the office had since closed. I called again this morning, and the woman I am used to dealing with, Vicky, was not in the office yet. Not to mention that I need my #$@!ing sensors.

This is not the first time MedEQUIP lied to me.

Last June, when my Dexcom receiver died (the USB port gave out), I ordered a new one through MedEQUIP. Several days went by; nothing. Three weeks passed and still no receiver. So finally I went and camped in the MedEQUIP office (thinking about doing that again today), and talked with Vicky, who told me that it was held up because they were waiting on insurance approval.

I later verified that this was absolutely false, and that the insurance had approved it within a few days.

If you are looking for a medical supplier for sensors that it reliable rather than ego-driven and substandard, my advice is to order through Dexcom and complain to the insurance company, your endo, anyone, so that MedEQUIP is held accountable for its distinctly mediocre service. At least Dexcom will be motivated to get sensors to you on time (they want to move more units, after all). They are also available when you need them, and will overnight sensors in a pinch.

*As a note, I found out that Blue Care Network (University of Michigan's largest insurance provider) does not allow companies to autoship sensors, nor does it allow 90-day fills of sensors. WTF?

"Your message is in the system."

So... (this is how most of my blog entries start).
The traditional health system in this country sucks. I mean, royally blows. It's pathetically broken.

I've been having a fun time with high blood sugars. And by high, I mean 120-200, which is by no means crazy high. Ever since I started my anti-diet (I had bacon fried in oil, topped with guacamole for breakfast), I have had really good control, and very few highs over 150.

Starting two days ago, my blood sugar started getting really stubborn and would not be nudged down with insulin. I took far higher doses than normal, but still no dice. I corrected for a BG of 180 with 3 units (each unit brings it down 35 points), so it should go down to 75.

Didn't happen. Only got down to 160.

No matter what I tried (short of crazy dosing with 10 units--I didn't try this as it would likely kill me), the BG stayed high, or came down temporarily and bounced back up.

Like a good diabetic, I called my endo yesterday morning. I explained it to the nurse (remember, a nurse in the clinic once told me that I could ease up on testing now that my A1c was 6.1).

"My blood sugars are not responding to insulin," I explained. "I've taken twice as much insulin as would normally be needed, plus a max dose of symlin. I haven't eaten anything carby, and still the BG is not budging. I don't know what it could be -- my insulin, my pump, perhaps I'm getting sick, maybe it's my time of the month... I am concerned that I might be in ketoacidosis. Here's what I've done: I've increased my basal rate by 35% and am drinking lots of water."

She said someone would get back to me.

NOBODY GOT BACK TO ME.

I called back in the afternoon.
"Oh yeah," I was told. "Your message is in the system."

Oh crap. Now I know I'm doomed.

NOBODY GOT BACK TO ME.

Here I am, potentially stewing in my own toxic acidic blood, and "my message is in the system."

Taking matters into my own hands (and after polling the myglu.org community), I went and did some yoga flows and strength training to get my blood flowing. By the time I was done, my levels were below 60.

OK. I can deal with lows. I turned my pump off for an hour, and it came back up slowly. The night was OK, never went above 125. Woke up this morning, went to work out, blood sugars are looking good.

Then, after eating breakfast (bacon and guac) and sitting down to work for an hour, the stubborn BGs are BACK! My blood glucose was 180. I took a total of 8.8 units (6.8 through the pump, and an additional 2 injected just to make sure it was getting in, plus 60mcg Symlin), and it only came down to 140! WTF, as my husband put it.

I called the clinic back. She said, alright, she'll make sure the doctor gets the message and will get back to me. I told her to note that I understand that they do not approve of my diet, but they will never convince me to go off it.

A few hours later, here is the call I receive from a nurse in the clinic:

Starts out with a disclaimer: "We do not recommend the zero carb diet, but if patient wants assurances that she is not in DKA, she can come in and take a ketone test. I recommend increasing her basal rate by 0.1 units and setting an alarm for 3:30am to wake up and test to make sure she isn't low.
I recommend the patient see if she is eligible for the continuous glucose monitor."

How does one describe the biggest pile of stinking, unhelpful dogcrap ever known to pass as "patient care?"

There are so many things wrong with this. It should be obvious, but I'll still take the time to outline why there are so many problems with this chain of events.

1. If the doctor is too busy to deal with patients, he should not have any patients.
2. This is the very doctor who prescribed me the CGM, so his advice to get one is just pure laziness on his part. 
3. Really, doc? You thought I was calling to ask what my basal rate should be set at? Do people still do that? Did you not get the part of the message that I had to relay through 3 different nurses that I already upped my basal by 35%
4. Lastly, and I say this with the utmost patience, it is not a ZERO carb diet. That is next to impossible to achieve. It's a 30-50g carb diet. But thanks for your accuracy and your malpractice concern.

I said thank you to the nurse, who clearly didn't know what the hell she was talking about and at several points in the conversation, actually said, "that's what the note says."

I also expressed some of the points outlined above and said, as I'll say again, THIS IS NOT CARE.

Here's my unsolicited advice. Get a doctor you like and who works with you, even if they are out of network or not covered. Honestly. I called my new doc, he called back right away. He took a moment to tell me sorry for the frustration I was experiencing, and brainstormed a series of events to try to make sure I was dealing with the problem (switch to long-acting to make sure it's not the pump's fault), and insisted that I check back in with him later in the day.

I'm having a really bad day but you would never know

While most days I feel relatively normal, today I really feel like a person with a disability.

What you would see on the outside is a seemingly able-bodied person, going about her day doing seemingly normal things. She goes to the gym in the morning she drives to work she eats her lunch and she does her work. 

But here's what you don't see: you don't see her getting dry mouth from having elevated blood sugars. You don't see her trying not to step too hard on her right leg because she put her continuous glucose monitor there this morning and it twitches a nerve every time she steps. You don't see her stress levels rising because no matter what she does, they don't seem to come down, which is only making the situation worse. You don't see her vision getting blurry from having elevated blood sugars. You don't see her feeling shitty about herself because she can't seem to keep things in control. You don't see the sticky marks all over her body where she placed her various devices. You don't see her hunger when she wants to eat like a normal person but can't, knowing that if she eats too many carbs she'll really be in trouble. You don't see her trying to ignore her high blood sugars and do her work well she patiently wait for them to come down with little success, but eventually caving in and having to go straight to the gym to run until they come down. 

All you see is that lazy girl next-door leaving work early again. 

Breaking up with conventional thinking on nutrition

I'm not trying to be all negative here, but I'm starting to get the feeling that we have got it all wrong.

My husband and I watched Cosmos last night, hosted by Neil deGrasse Tyson. I loved how he emphasized how dedicated science is to follow where the evidence leads. Except when it comes to nutrition, I guess.

Here are some revelations I have discovered in my nutrition awakening, relevant only to what I previously believed:

1. You have to limit fat if you want to lose fat.
FALSE. Limiting dietary fat is no fun and is largely unsustainable. Instead, try limiting carbs, which will subsequently lower insulin production (the hormone responsible for triggering fat storage). Of course, you shouldn't outeat your true energy needs no matter your macronutrient ratios. Fat is amazing. It tastes great. And if you can change your metabolic pathways to better utilize fat for energy, fat can be so beneficial in curbing hunger, providing sustained energy, and burning fat.

2. Every meal should be a balanced meal.
NOT REALLY. It kind of depends on what your body needs. If you need some quick energy (as an efficient fat burner), you should go for some medium-chain triglycerides or saturated fat, such as coconut butter, butter, coconut oil, and palm oil. If you need micronutrients, you should go for chia seeds, avocados, asparagus, spinach... Carbohydrates are the only non-essential macronutrient. We would die without dietary fat. Same for protein. We would function just fine without carbohydrates. The body has other mechanisms for creating glucose, which is essential for a small portion of the brain.

3. It's best to eat small meals throughout the day.
NOT IF YOU CAN BREAK YOUR CARB ADDICTION. While this may be true for the majority of the population that depends on the quicker burning (non-essential) carbohydrate diet, this is good advice. If you are working with mostly fats, then your meals will naturally be small (fat packs in a lot of calories), but you can (and should) go for at least 5 hours in between meals. Some people even try intermittent fasting (IF) and do just fine.

4. Breakfast is the most important meal of the day. 
AGAIN, TRUE FOR CARBERS. NOT TRUE FOR EFFICIENT FAT BURNERS. The reason that carbers should never skip breakfast is because their body is at the whims of the blood glucose cycle. Your body needs to replenish the glucose stores it went through during the night. If you don't replenish these supplies, you can land yourself in big trouble (read: famished by lunch, craving carby foods and further exacerbating the cycle). However, if you train your body to use fat for fuel, you will efficiently burn stored fat throughout this morning period without getting super hungry and without losing energy. This is freeing.

5. If you skip meals, your body will go into "starvation mode."
KIND OF TRUE, BUT MISREPRESENTED. Starvation mode is the amazing mechanism of our bodies turning to stored fat for fuel. But your brain needs some glucose, so it will use some stored glucose for that ~20% brain function that relies on glucose (the rest can use a byproduct of fat breakdown called ketones). If need be, your body can bust into lean muscles and tissues for protein, and create glucose from it, called gluconeogenesis. If you are already an efficient fat burner, "starvation mode" makes little difference. See the previous point about skipping breakfast. You should eat. Your body needs fuel eventually, and you do NOT want to start metabolizing muscle and tissue.

Until recently, I was participating with a group of health coaches promoting the low-fat, high-carb, restricted calorie lifestyle. I think this approach is one that will work for many people who lack the discipline to stay away from carbs and realize that they "like" carbs because carbs stimulate pleasure in the brain--let's think of other ways to do this! But if we are going to really educate people, we should be screaming from the mountaintops: There is no one size fits all approach! And if there were, it would certainly not be a high-carb, low-fat approach. Calorie restriction and low-fat, high-carb usually does not work long-term, and it certainly isn't working as a societal recommendation.

It can work short-term, and it can work for people with the right kind of genes to handle all those carbs, but I am convinced that our dietary guidelines should be steered to a lower carb approach. Maybe 60% of calories from fat, 15% from carbs, and 25% from protein.

For your entertainment, here are a few gems of the "fuzzy math" of nutrition being promoted by self-titled health coaches:

• Your body turns protein and fat into glucose. Huh? Since when? Your body turns carbs into glucose at very high rates, turns 30-50% of protein into glucose (which is why you shouldn't overdo protein), and, in rare circumstances, can turn as much as 10% of fat into glucose (like, if you have been running for 40 hours and have run out of glucose stores and you broken down a significant amount of muscle and tissue--not a common scenario).
• Complex carbohydrates are called as such because they have protein in them. Yeah, that's not really how the naming convention works in science. It's based on the structure of the carbohydrate molecule, and how complex it is compared to a simple sugar. Nothing to do with protein. 
• You should eat 1.5 g of protein per pound of body weight. OK, all you are doing here is providing an excess of protein to be turned into glucose. Good job. The recommendation on this one is pretty sound, actually (about 54 g of protein for a 150-lb adult; not at least 54, but 54). It's mostly comes from the performance oriented goals of sports nutrition science. As a caveat, if you are truly building muscle, then your protein needs will be a bit greater. Also--a good benefit of protein is that is slows digestion and hence, makes you feel full. An overage of protein can stop up the works. The best approach to calculating your protein needs is to start with your bodyweight, and from there, account for any significant muscle-building you are consistently doing.

And while we are on the subject of protein, all of these protein-pushers may be making a quick buck on the trend now, but some new research even suggests that a surplus of protein might have detrimental health effects.

Unfortunately, I don't think there's as much money to be made from promoting a high-fat, low-carb, moderate protein lifestyle. Protein is expensive and has many allies (meat and soy industry, nutrition companies that are on the protein bandwagon), carbs are a cash cow for the food industry (cheap to make and you can rely on people's cravings for them), and are especially lucrative when you throw a "low-fat" banner on the label.

Where's the money to be made in promoting whole foods that naturally promote less consumption, like olive oil, butter, green vegetables, coconut milk, etc... ? In this approach, you would need to eat a lesser amount of food, as your energy is mostly coming from fats, which pack more that 2 times the amount of energy per gram than protein or carbohydrates. Instead of a huge, $15 salad with fat free dressing and chicken, you could have what I had today: 2 eggs cooked in coconut oil plus 1/2 an avocado. Last night I fasted from 4pm to 11am this morning and felt totally sustained. Not to mention my blood sugar stayed on a straight path between 75 and 110 all day. Pretty good for someone with a dysfunctional pancreas. And for someone living in a country with dysfunctional thinking on nutrition.

Going rogue... with the guidance of a medical professional

Ever have one of those moments where you decide to act upon something you have been thinking about for a long time? Well, I'm having one of those moments. It feels like I'm breaking out of prison.

Fine, I'm not batting 1.000 as one member of tudiabetes.org put it. We will see what my next A1c is. I can't be sure it's amazing, but I do know that I have been AT EASE for the past 3 weeks. Ever since Feb. 7, the day before my birthday, when I decided to break up with carbs.

The moment I spoke of before was not deciding to break up with carbs, but was the moment I went into my online health portal and CANCELED all my appointments. It was symbolic, of course, because I can always go back in and reschedule them. But still...

So, here's a breakdown of how everything has been since then:
I went to see this holistic doctor. I had seen him before. Before I was on the University of Michigan's HMO, when I was still on COBRA and I would have had to pay outright no matter where I went. But when I jumped on the UM HMO, I made decisions based on what would be covered. So, instead of seeing the doctor I wanted to see, I ended up with 5 doctors that I didn't want to see: a PCP, 2 endos, a pump specialist, and a nutritionist. All with a copay of $20-30, so I didn't even end up saving anything! (The holistic doc charges $105 per visit.)

UNSOLICITED ADVICE: Paying out of pocket for GOOD medical care is a much sounder financial decision than paying copay after copay for BAD medical care. 

Here's what I liked:

1. He gave me a hug when he saw me, and upon parting (warm fuzzies!)
2. He has a dog in the office that is super friendly 
3. He is willing to say "I don't know" when he doesn't know (unlike, ahem, some people in the diabetes clinic who would rather spout off 45 minutes of 100% grade A bullshit than admit they don't know). 
4. He's totally on board with low-carb (He said, "Anyone who isn't on board hasn't read the literature in the last ten years). I happen to think they are unwilling to depart from the old ADA guidelines, even though ADA has now updated their guidelines to say that, in fact, there isn't a one-size-fits-all approach to carb intake, and even reference studies with 20g daily carb up to 40% of calories from carb as having great impact on glycemic control. 
5. He's going to "go rogue" with me... ie: be there to give me sound medical advice, but not treat me like a number (test result number). He told me to still see my endo, and I told him, fine, but I'm just going to smile and nod and then go off and do what I feel is right. 
6. He isn't going to designate me as a "high-risk" anything, because I'm not high risk. My numbers are good. I'm super healthy. I don't need to be cradled and babied just because I have type 1. I can experiment with things like diet and exercise and that's OK. I don't have to sit still all day and nibble on three meals and three snacks throughout the day and eat the same thing and never try anything new.

And now, for an update on my BGs:

It's a bit rocky (by my new standard) today because I am entrenched at work with a deadline. Finally got my report in, and my CGM didn't beep at me all day, so I only just now looked at it.

Funny--when I first got it, I was OBSESSED. I looked at it all the time. And was often surprised at what was happening. Now I kind of assume my BG is in range.

Breaking up with carbs, too

It's been two weeks since I decided to go low-carb. I'm talking LOW carb. Less than 30 grams/day. Some days my carb intake creeps up to 50g, but I always make sure my net carbs are staying under 30 (total carbs minus fiber).

Other closely related nutrition philosophies include: Paleo, Atkins, South Beach, The Zone, Ketogenic (more accurate for what I'm doing), Dr. Berstein's Diabetes Solution, Primal Blueprint...

I started on Feb. 7, the day before my 31st birthday; 18 years into my life as a type 1 diabetic. 

The result has been this: I have never had such good control. My lows are as low as 50 (one instance in the last 2 weeks), but usually no lower than 60 (also rare, and I don't feel them because my body isn't relying on blood glucose for energy). My highest high was 250 on the second day of this experiment; other than that, it's gotten as high as 210 twice, the next highest high was 170 (about 4 times), but mostly stays under 140 after meals.

And as my body adapts to this new way of doing things, it's getting better.

• The last 24 hours didn't see a blood sugar over 125. 
• I went to the gym for the past three mornings and didn't worry about getting low or high. It stayed FLAT.
• I've been able to get OFF the constant snacking that is required by the traditional restricted calorie, low-fat diet. 
• I'm warmer.
• I am NOT hungry. Seriously. Not ever. Unless I go for 24 hours without eating. Then I get cold and hungry, but only after around 20 hours without eating. It's called intermittent fasting. Google it.
• I'm feeling more even keeled/sustained energy.
• I have reintroduced nuts into my eating! And dips. And bacon. And other delicious, satisfying foods. Just no carbs (but I do NOT miss them).

Here's my 24-hour readout from Dexcom. The "high" is set at 120 (this used to be my target BG, not my target is 90).

Can you guess when I ate? When I worked out?

I would absolutely recommend this plan to anyone willing to do the research it takes to understand it, and who is willing to be 100% committed to giving up carbs. This means (for me at least):

• No sugar
• No bread
• No pasta
• No grains
• No fruit (except <50g berries)
• No milk (too sugary)
• No juice, soda, Starbucks fancy pants drinks, hot cocoa, etc.
• No tubers--beets, potatoes, carrots, parsnips, etc
• No legumes--too carby
• Careful with veggies--some might have surprising amounts of carbs. I once cured a low blood sugar with Brussels sprouts!
• Make sure you have a really good understanding of the carbs in foods--cashews, for example, have 8g carbs in a small handful! 

Here's a typical day for me these days:

Breakfast: Breve latte (half & half + espresso), cheese omelet, turkey sausage
Lunch: Avocado, Soy pups, tehina sauce, unsweetened iced tea
Dinner: Coconut chicken curry, cauliflower mash, with peanut butter balls or cheese for "dessert"

It's not a lot of food because fat is more densely packed with calories. 9 calories per gram as opposed to 4 calories per gram for carbs and protein. 

I am NOT doing this for weight loss, although I did lose a lot of weight in the first week as my body emptied its glucose stores (which requires water). I'm hoping that I will lose a bit of weight as I stay on this plan (and bring down my calories), but I am entirely doing it for BLOOD SUGAR CONTROL.

My endo told me not to do it, so I fired her and found a new doctor. She couldn't really give me a reason not to do it. The nutritionist pushed me to eat at least 130g of carbs a day, so I also fired her. Her reasoning is that your brain needs glucose--which is true, but the body has a mechanism for making glucose from protein, a process that results in much smoother blood sugars than carb consumption. Check out my previous post for a recap of that frustrating set of events.

Here are some amazing resources I have come across:

Mark's Daily Apple
Dr. Mercola - does video interviews with some of the best thinkers on nutrition and sports
myglu.org is a community of type 1 diabetics, and supporters of type 1 diabetics. There are a good sprinkling of type 1s who are catching on to this way of controlling BGs
Dr. Bernstein's Diabetes Solution - is a quirky read that has revolutionized the way I think about blood sugar management

Also -- playing with intermittent fasting. It tends to push your body to more quickly adapt to dietary fat as energy. 

Here's my Pinterest board for good recipes for low-carb, high fat foods.

Why I'm breaking up with my endo (and entire diabetes team)

I have officially broken up with my diabetes team at the University of Michigan. Eff it; I'm going to see a holistic doctor next week and we will see what happens. I'm thinking about breaking up with Western Medicine altogether (but have enough respect for science that I won't do it).

While I'm a huge fan of taking your medical condition by the horns and owning that sh#!, I'm less of a fan of listening to doctors, diabetes educators, nurses, and nutritionists who CAN ONLY SPOUT DOGMATIC GUIDELINES.

Here's what led to my break-up:

1. My endo (head of the clinic, BTW) found a teeny tiny module in my thyroid, put me through all these tests (ultrasound, biopsy--large needle straight into my neck, and testing thyroid hormones). First-of-ly, the nodule is so super teeny that it isn't big enough to be a concern! Second-of-ly, he told me the there was no way to take preventative measures to make sure my thyroid production stays normal. Pshaaaa!!! I started taking iodine, and like MAGIC, my levels got even better! Not that they were AT ALL worrisome in the first place.

Red flag #1: Doc takes the approach "wait until it's really bad and then treat it."

2. The pump specialist. Oh, the pump specialist. Bless her, she's a nice person, but wow. "Specialist" is a strrrrreeeeeetchhhhh. Point one: she's a type 2 diabetic on a pump. Nothing is wrong with that, but there are just different considerations for type 1s. And wouldn't you want a type 1 pump specialist? Or someone who is up on the latest research on type 1s/pumps? Considering most candidates for pumps are type 1s?

Next point: She has folks start on a flat rate and kind of wing it from there. I don't know about other type 1s, but I need more accuracy than that! So I looked up Medtronic's guidelines for adjusting rates to account for Dawn Phenom, higher day basal, etc, and started there. (OK, this is for preggers women, but is based on Medtronic's guidelines, and down the page lists out the calculations.) She was upset about this and told me she was "very concerned" that I had done this without consulting her. Wah?!?!?! Do you know type 1s? They are constantly making decisions about their doses. Seriously. She instead wanted me to go on a flat rate and just "wait and see" how Dawn Phenomenon affects me. Hon, I know how it affects me, I've been on a pump before, I'm on a CGM, and I've been a diabetic for 18 years! UGH.

Red flag #2: Pump specialist not so much a specialist, but someone who knows the basics of pumping.

3. I was shipped off to the clinic's nutritionist, who did little more than tell me the ADA Guidelines for nutrition. And the OUTDATED GUIDELINES at that! They have since updated their position, saying that there is no such thing as a one-size-fits-all nutrition guideline for carbohydrate, fat, and protein intake. They go on to cite several studies that show the benefits of low-carb diets on glycemic control:

Carbohydrates: Evidence is inconclusive for an ideal amount of carbohydrate intake for people with diabetes. Therefore, collaborative goals should be developed with the individual with diabetes.

They go on to say:

Some published studies comparing lower levels of carbohydrate intake (ranging from 21 g daily up to 40% of daily energy intake) to higher carbohydrate intake levels indicated improved markers of glycemic control and insulin sensitivity with lower carbohydrate intakes... Some studies comparing lower levels of carbohydrate intake to higher carbohydrate intake levels revealed improvements in serumlipid/lipoproteinmeasures,
including improved triglycerides, VLDL triglyceride, and VLDL cholesterol, total cholesterol, and HDL cholesterol levels...

I wrote the nutritionist a note today, voicing my concern at her bad advice (trying to be diplomatic, but not too condescending). 

Red flag #3: Not up-to-date on the latest research and prescribing a one-size-fits-all solution that doesn't actually work for most people.

4. When I did share with the endo (another endo on my "team" who I see more often than the head of the clinic) what I was doing, she balked. First, a little backstory: She congratulated me on my excellent HA1c (6.1 woot woot). Keep in mind that glycemic control is the NUMBER ONE indicator of overall health of a diabetic... poor control potentially leads to all of these complications you hear about. So she says: GREAT JOB! and furthermore, REALLY GREAT JOB on not getting plummeting lows anymore. Yet, when I shared what I was doing (less than 30g carbs daily) she said, "No, no, don't do that."
"Why?" I asked.
"It's not recommended."
"Why?" I repeated.
No answer.
Thanks for the advice, doc, but unless you can give me a why beyond the tired dogma of the traditional nutrition guidelines (which, by the way, I've read, and it's a REALLY SHAKY set of events that led to the current guidelines on carb consumption), then I am going to listen to my body and my numbers. Here's an interesting read by Gary Taubes on the history of the creation of low-fat, high-carb guidelines.

Red flag #4: Dogmatic approach to diabetes control. Can't answer "why." (Side note: I would have far more respect for "We don't know" as an answer.)

5. The cherry on top: The nurse that weighed me, took my HA1c, etc... told me the following:
She was going over my prescriptions: "Your prescriptions for test strips is for 10/day."
"That's right," I told her.
"Insurance won't cover that." She told me.
"Don't worry about insurance," I told her. (I get my 10 strips covered no problem.)
"But your A1c is good so you don't need to test so often," she offered up as unsolicited advice.
"Um, my A1c is 6.1 exactly because I test ten times a day," I let her know.

Red flag #5: Bad advice is coming out of the walls!


Here's my new plan:
I cancelled my appointments; my thyroid follow-up, my next two visits with the endos, a visit with another specialist. I'm going to a hollisitc doctor who I have seen before. Hopefully he will get it. His son has type 1 since childhood, so I'm very confident that his approach will be more about what's going to work for me, rather than what the guidelines state.

I also hope that he will be supportive of my low-carb approach and help me work through the kinks, rather than being dogmatically against it without any scientifically sound reason.

The anti-diet: Day 1

I've decided to go against every shred of nutrition advice I have received in the past 18 years of having diabetes. This advice has resulted in less-than-desirable control (HbA1c never lower than 7.4), and a life of frustration and constant struggle to keep my blood sugars in line.

In October 2012, I had the good fortune to meet a health coach with Herbalife. She helped me come up with a nutrition plan that focused on foods that have minimal impact on my blood sugars. Indeed, I brought my HbA1c down to 6.4 for the first time in two decades of having this condition. My focus was starting my day off with a protein food that contains some complex carbohydrates (read: fiber).

This protein/fiber focus is what really got me on track, and I also went from 151 lbs to a slender 132 lbs just in time for my wedding!

I don't know what started me on this latest kick--I can't remember what light went off in my head that there could be an even better way. But here I am, OBSESSED, and starting on my first day of giving the big middle finger to the diabetes medical community.

I'm not telling my doctor. I know what they will say. They've been saying it for years. But I've done a considerable amount of research and have come to pick apart the science, and all reliable, logical conclusions lead to this:

Switching your body to rely on fat for most of its energy needs will be a sustainable, effective solution for smoothing out blood sugar levels.

Here are some resources:
Understanding the history and politics of the low-fat recommendation: http://www.diabetes-book.com/articles/ssdf.shtml

This is an amazing overview of metabolism.

DAY ONE:

Breakfast: 8am
3 whole eggs with 50g of regular, high-fat cheese and one green onion. Cooked in 1 tbsp coconut oil.
Latte made with soy milk creamer.
So freakin delicious after spending the last 18 months adhering to a balanced, lowish carbs, high protein foods (read: protein shakes). 

Supplements included: fish oil, multi-V, fiber

Snack: 11:15am (I was not even hungry!!! Breakfast kept me super full)
350 calories of macadamia nuts. Mind you, I haven't eaten nuts in FOREVER! There was previously a nut ban in my home because of their densely caloric nature.

Lunch: 12:30pm. Feeling really good.
2 cups of broccoli. Eaten with 1 avocado mushed and mixed with 2 tbsp salsa.
I know this doesn't sound like a lot, but I already wasn't that hungry, and this kept me feeling very satisfied (fat will do that).

Snack: 3:15pm. Still feeling really, really good.
Cucumber with bacon cheddar dip. Holy crap, I am literally spooning bacon cheddar dip into my mouth. Mind you, I am restricting my calories to 1640/day, so I'm not going too crazy. 5 calories worth of cukes dipped into 300 calories worth of bacon cheddar gold.

Blood sugars are OK. I reduced my basal to about 50% but have had to take a few small boluses. It got as high as 214, but I really want to keep it up around 160 so I don't have to RUIN everything by having to treat a low, which I had to do early this morning.

So far, I am at 27g of net carbs. I feel really good. I plan on working out later with no insulin on board in order to get my liver to dump some more stored glucose.

So far, so good!

Everything they tell you about nutritional guidelines is wrong.

I don't know why this rubbed me the wrong way so much:

I went to see a dietitian in the Metabolism, Endocrinology, & Diabetes clinic. I went in with a chip on my should already, because what could SHE possibly have to tell ME that I didn't already know after 18 years of living with type 1 diabetes for 18 years?

We started by going through my typical day of eating and looking at my blood sugars (rocking out at HbA1c = 6.4), and all she had to contribute was "good job."

She told me that "you should be eating at least 130 grams of carbs per day."

"OK," I told her, "I'll dip into a jar of jelly beans every night before I go to bed. That should do it."

Then she started explaining that they should be whole grains, spread throughout your meals and snacks. She spouted the typical dribble I've been hearing my whole life: 30-45g of carbs with every meal, 15g for each snack.

I asked WHY? Why do we need to consume at least 130g of carbs each day? And that kind of implies that it's a minimum, and we should REALLY be doing MORE, which goes against everything I believe in. (Aka: Americans are fat because they eat wayyyyy too many carbs, and if anything, we should be giving them a maximum, not a minimum.)

Your brain needs glucose for fuel--that was her explanation. I've heard that many times before, including from my health coach who approaches nutrition from a more reasonable stance, IMO, and advises 3 servings of whole grains per day--that's it.

SO... I started looking into it. Does our brain rely solely on glucose for energy? And if so, how much? Where do these guidelines come from? I'll start there.

1. Where do the guidelines come from? (The recommendation of at least 130g of carbs daily.)
Answer: From the FDA. Research shows that in a typical diet, the brain uses glucose (all carbohydrate breaks down into glucose with the exception of dietary fiber). They came up with this recommendation based on how much glucose the brain needs at a minimum for a good, functioning brain. Good rec, right? Well, in the report that outlines these guidelines, they also reference studies showing that, actually, the brain can use another source for fuel: ketone bodies. Ketone bodies are made when breaking down fat or drawing on stored fat for energy. We all make ketones when we are fasting (like overnight), and it is a comparable, arguably better, source of energy for your brain.

Before 1921, when the late great Fred Banting discovered insulin (the best discovery of all time), people with "sweet death" could prolong their lives for weeks or months by consuming zero carbohydrates--they ate mostly fat, and a bit of protein. So...

2. Does the brain rely solely on glucose for energy? NO. A resounding NO. We just don't understand the alternate process enough to feel good about recommending it. I'll give it a try:

There are a few parts of the brain that rely only on glucose, but we can actually convert protein into glucose for those purposes. So, do we NEED carbohydrates to survive? Nope. It's the only of the 3 macronutrients that we DO NOT need.

So, given that we will inevitably eat a few carbs no matter how hard we try, and we will definitely eat some protein, those parts of the brain are covered. The rest of the brain and the body (muscles and all), can rely on dietary fat. The brain (parts that don't require glucose) can use something called ketones, which are made in the liver when breaking down fats. This only happens on a large scale when there is little to no carbohydrates available, and insulin levels are nil in the bloodstream.

Your cells, including your muscles, are perfectly happy using fat for energy, and your brain will use ketones. A bit of protein will help your muscle development and some will convert into glucose for your brain.

Cholesterol seems to be a problem only for folks who consume too many carbs and store fat (especially saturated fat), but when eliminating carbs, this isn't a problem.

I heard about a man in Australia who takes one daily shot of basal insulin (6 units!!!!) and does not see many fluctuations in his blood sugar levels.

Check it out: http://www.youtube.com/watch?v=TR8rc_AF6XU 

So here I am: 18 years in and just hearing about the ketogenic diet. I'm all in.

Day 1 (today)
Breakfast: Cheesy 3-egg omelet cooked in a generous amount of coconut oil with a latte made with soy milk creamer. 0.9 units for a bolus, and my basal rate is set at 50% of my normal regime. 

How many bureaucrats does it take to order an insulin pump?

I'm dizzy in the head from all the waiting music and bureaucratic bulldoodie. I don't even know what is happening.

On Dec. 6, I met with a pump specialist at the diabetes clinic. I chose a pump. The specialist called my the following Monday to let me know she had acquired the appropriate approval from my endocrinologist and would start the process of ordering the pump.

That's where efficiency, bedside manner, and personalization end, and the order enters the underworld of insurance bureaucracy.

Here's the information I have: MedEQUIP is the University of Michigan's medical equipment one-stop shop. They process and ship all of my diabetes supplies: test strips, sensors, lancets, etc... They apparently receive the pump order and collect the necessary paperwork to push it through to the manufacturer. It's now Jan. 15. As far as I can tell, not much has happened. There's one woman who deals with diabetes durable medical equipment orders, and she is NEVER available. She is very good and knows her stuff, but it's just really difficult to reach her. We've played phone tag a number of times, and finally she left a voicemail asking me to verify my address. I did so, and settled back into trying to wait patiently.

I called MedEQUIP this morning, and they told me that the order was placed today (well, yesterday, but too late to count). They went through the order and told me that it is now being sent to the manufacturer (OmniPod).

However, when I called OmniPod, they said they have no record or any order being placed. They told me that they deal with another company called J & B Medical Supply. They also said that there is no need to go through MedEQUIP; I can just get all the paperwork myself and go through them (OmniPod) or J & B Medical Supply.

I tried calling J & B Medical Supply, but they didn't answer after around 10 minutes holding.

I called MedEQUIP back. They have now revised to tell me that actually the order does go through J & B Medical Supply. I'm scratching my head...

While I was talking with someone in the orders department, she got a call from the one woman who deals with diabetes orders, and finally I'm patched through to her.

She explained that she had to wait for approval from the doctor to change the test strip order (change of test strip brand because the pump uses another brand for its built-in meter). The doctor approved the change, and the order is rolling again. She said that the order for the pump does indeed get processed through J & B Medical Medical Supply "because of how the contract is set up."

The pump is on its way, she assures me. J & B Medical has the inventory on hand, and will ship it out right away.

So, how many bureaucrats does it take to order an insulin pump? Well, at least I can actually get an insulin pump. Pre-ObamaCare, after I was repeatedly and categorically denied coverage because of my pre-existing condition, after I went crying to the county-level social services and begged them to put me on their plan for people who fall through the cracks, after I got to see a primary care physician--not even an endocrinologist--for 15 minutes and not a second longer, after I was denied coverage for an insulin pump because it was considered "experimental" under this coverage despite being a long staid in medical treatment, I am HAPPY to wade through the bureaucracy for my quality-of-life improving insulin delivery system.