Digital Snake Oil

300px-Handlebar-moustache.svgEnvision a sleepy downtown in the Wild West, where horses slurp water from the trough in front of the general store and women bustle along the wooden porches to make their purchases.

The stagecoach pulls up, generating a dust cloud out of which emerges a foppish, yet dapper man with a big handlebar mustache and an even bigger smile. He hefts several battered, sturdy leather cases off the back of the wagon and sets them down around him, surveying the area for the best place for him to set up shop.

He’s here to make a fast buck, hustling oils and liniments that will cure everything from melancholia to thinning hair. That snake oil salesman will talk a mile a minute, promise the world, and then when the getting’s good… he’s off to the next stop to swindle more unsuspecting rubes. Melancholia remains. Hair continues to thin.

It may not be the Wild West anymore (which is good, because I’d be dead before I could wear a corset), but the stagecoach remains; these days, it’s called the Internet. The snake oil salesmen (And women, because we’ve come a long way, baby!) use videos and pretty pictures to sell their cures – and these charlatans are everywhere.

This morning, after a curious comment on a diabetes FB group, I did some fast research – and found digital snake oil. This particular individual in his six minute video claimed to be “cured” of his Type 2 diabetes and for only… get this… $97 per month… will give you his roadmap on how he did it and get you access to his diabetes expert (who is a doctor who writes diet books).

There was no “free trial” and there was no “guarantee” – just a guy who claims to have been diagnosed in  2002 and weaned himself off all of his medication after hearing from doctors that he needed to begin an insulin regimen. He actually states in his video that he repeatedly went against medical advice.

Let me save you some time and money – and this “roadmap” won’t cost you anything. I’m giving it all to you for free. (I know. So generous.)

1. There is no cure for diabetes. Type 1? No cure. Type 2? No cure.

Yes, if you are Type 2, you can live well without medication if your diabetes is well-controlled. There is no shame in having to take oral medication or insulin; your body may just not make enough insulin or not utilize it properly. Anyone who says to you: “Oh, you have to take insulin? You must have it bad, ” deserves to be heartily ignored or given a raspberry by an orangutan.

We’re clear on that now? No cure. Repeat after me. No cure. Yes, it’s not a happy mantra, but it’s a real one.

2. This is not the Wild West. You don’t have to be a maverick.

Don’t go it alone. Don’t go “against medical advice” repeatedly. It’s perfectly OK to use the Internet for research into new treatments and management protocols and it’s great to reach out and ask others to share their own experiences, but they are not your medical team. Find a medical team that you can trust and work with them. If you are an informed patient and believe that your medical team isn’t up-to-date on the latest techniques and protocols, either find a new medical team or share your scholarly articles with them and you can investigate together.

3. Here’s a short list of treatments that don’t work to “cure” your diabetes: exotic herbs and spices, embryonic stem cell treatments, colloidal silver, Brewer’s yeast, colonics, fasting, aloe vera juice, blubber from a walrus, and the ever popular cinnamon. 

What treatments do work? Lifestyle changes (otherwise known as “diet”, which is a word I abhor), exercise, medication, monitoring, a continuous feedback loop between your medical team and you, tweaking (not twerking, ewww) your diabetes management when needed, and support (like the amazing DOC or online support sites or face-to-face groups and conferences).

There are so many individuals who are misinformed, mistaken, and in need to help. I’m appalled that there are those who see them as an opportunity to make a fast buck, preying on those who sadly believe that this snake oil will cure them.

Because when the dust settles, these digital snake oil salespeople will be gone – along with the money.

And the diabetes will remain, tied up to the water trough, waiting patiently.

 

This Is What A Bear Looks Like…

This is not an image of a bear. But it is an image of me.
© Thann Clark

Were you expecting a snarling grizzly?

Surprise.

You shouldn’t be.

I am many things.

A person with diabetes. A protective mother. A starry-eyed spouse. A goofy friend. An enamored daughter. An enlightened consumer. An avid collector of black boots.

I share my personal experiences and opinions on my blog about diabetes – and other things, including my strange taste in music and bad movies. People seem to like what I share, so I keep on. I may pass along links to websites that could provide helpful information to others. On occasion, I will throw a statistic or two. (My math skills are horrendous; I’ve made no bones about it. You can thank me for not accepting offered entries to several universities for engineering. Think power grid failure on a global scale because of me. You’re welcome.)

I might even give a fact when the mood strikes. If the facts I do share are incorrect, I will do my utmost to rectify my error immediately. And I have in the past. I hate making errors. It frustrates me as a perfectionist.

I am a perfectionist.

(Check the name of my blog if you’re unsure. You may think the title is facetious, but it’s really not.)

If I share facts verbally in an open forum, I expect that a rational individual would politely refute my statement, publicly or even in a private conversation at that forum, so that we all are on the same page. If I share them in writing, all that is needed is a simple email as to how I erred and what needs to be corrected.

I was recently on the receiving end of a few emails of rhetorical, slightly accusatory, and persnickety questions, based on an error made in a statement that most of “my constituents” would even know about, because I will never mention the name of the company again in public or in writing.

That individual wrote that:

I am a reporter.

Then in the next email response, I was “downgraded” to writer. (Not sure why that would be perceived as a downgrade. I certainly don’t think so.)

Then the individual, in the final email to me, decided on telling me that:

I am an editor of information. (Implying that I pick and choose to bend my words and facts to create an illusion of what I think is true.)

I am none of those.

I am a storyteller.

I weave words together to envelop those who want to read what I have to say. When I am wrong, I pluck the malfeasant phrase out and still keep that blanket of a tale together. I admit when I am wrong. I do not appreciate those who attempt use my blanket to create a tent for their own camping excursion. Because you know what you can find in the woods?

A bear that does not like to be poked.

 

Fab Five Fridays: Dumb and Dumber Edition

Dumb. And Dumber.
Dumb. And Dumber.

Not a huge fan of the movie, Dumb and Dumber, mostly because if I wanted to watch unintelligent people, I don’t need to spend money. There’s an entire world out there of individuals making jackasses out of themselves and we have front row seats.

However, the title is apropos for today, as I’m going to give you five responses to five dumb things people say about diabetes. (Warning: You may not want to actually use these. Then again…)

1.  “You have to take shots? I could never do that!”

The answer I want to give:

“Oh, I totally agree with you. I’d rather waste away, having my body slowly poison me with ketonic acid. I mean, dying slowly by acid is straight out of a sci-fi movie, right? The insatiable thirst I’d have? I love Diet Coke, so that’s a win. Drink as much as I want. I’m not really thrilled about that whole organs shutting down, going into a coma, and not waking up ever again, but what you gonna do, right?

Wait. I know. Take a shot because my life depends on it.”

2. “My (insert family member) had diabetes and had to have (insert body part) amputated/transplanted/dialysised (I know it’s not a word, but…) but they died anyway.

The answer I would love to give:

:: middle fingers waving wildly on both hands::

The answer I would probably give if I didn’t have a filter:

“Wait. Let me try to understand this. You want to tell me all about someone who died from the disease that I live with everyday and all the horrible things that could happen to me? What kind of sadist are you? The verbal kind, apparently. You’ll never make it into the 50 Shades of Grey movie that way.”

3. “Should you be eating that?”

The answer I would pay money to give:

::stuffs four of whatever it is into my mouth, then proceed to do my impression of John Belushi in Animal House::

The answer I would give if there were no mashed potatoes present:

“I’m so glad you caught me eating this! In reality, all I am allowed is water and cardboard sprinkled with artificial sweetener. Once in a blue moon, I can have a wilted piece of Bibb lettuce with some fat free dressing. Without you standing here questioning my judgement about what I can or can’t put in my body, I’d be done for! Thank you!”

4. “I heard about how someone who took (insert useless food item here) or used (some inane thing) was cured of diabetes. Have you tried that?”

The answer I’d give if it wasn’t illegal:

::grab the closest cudgel and hit the person over the head::

The answer I would prefer to give if I couldn’t render them unconscious:

“No way! Get me some of that stuff right now! My doctors have been lying to me all of this time! All that money wasted on insulin and testing supplies and labs! All that time spent in hospitals! All those tears! All that heartache! How come no one before you ever mentioned this! ARRRGGHHHHHHHHHHHHHHH!”

5. “I thought you couldn’t have kids if you have diabetes. I saw Steel Magnolias.”

The answer I give:

“I saw it, too. It sucked. It sucked more than Dumb and Dumber. Have you read my blog? You should.”

Et Tu, Brute?

CaesarCaesar got his on the Senate floor; I got mine in a bright conference room.

The meeting yesterday was going well. One of my goals after settling into the house was to become involved with the local diabetes chapter, and I’m so glad that I reached out. The people I’ve met there so far have been enthusiastic, engaged, and forward thinkers. I’m looking forward to seeing what they come up with to provide support and research funding opportunities  and to lend a hand (thankfully, not a shoulder) and my talents where they are needed.

Another new individual was attending this meeting and he soon realized that we were the anomalies; T1s with at least 30 years under our belts (or our non-functioning pancreases). With the DOC and many face-to-face meetings of other T1s in the past few years, coming into contact with another T1 isn’t much of a big deal to me, but reflecting on what happened, I can only assume that he rarely has opportunity to chat with other people with diabetes.

The conversations flowed about the topic at hand, which wasn’t about diabetes management. He would interrupt and ask questions every few minutes, which were politely answered. I understood he was eager to learn about the project, had lots to say, and was retired. He had all the time in the world. I didn’t. I was eager to get through the meeting in the allotted time I had scheduled for someone to watch The Kid.

He wanted to talk about how we (he and I) had so much to offer newly diagnosed families and individuals because we’ve had diabetes for so long. I had to stop him. And so I did, as politely as I could.

“Skippy (not his real name, but I think it’s a cute one), while we have had diabetes for quite a long time, our experiences are very different. In fact, all people with diabetes and their families have different experiences, so it’s hard to just say that because I’ve had diabetes for 30 years, I’m better qualified to talk with someone. For instance,” I added, “even though you and I are both Type 1, you most likely didn’t deal with an eating disorder called diabulimia in your youth. I may be better suited to talk with parents or kids who may be experiencing that.”

And then it happened without warning. I didn’t even feel it until it was in up to the hilt.

“But you look so healthy.”

I’m almost immune to the crazy comments I hear these days when people find out that I’m living with diabetes. To hear one of my least favorite responses coming from another Type 1 left me mentally staggering around, trying to pull that knife out of my back.

Ours is an invisible disease. Yes, we may wear insulin pumps and CGMs and medical alert bracelets, but if we are doing it right, people can’t tell we live with a chronic illness. (And sometimes, even when we’re not having a great day with diabetes, it’s still invisible unless you know us well.)

I’m healthy. For a Type 1 who had multiple treatments for trigger finger and frozen shoulders.  For a Type 1 with a clinically significant macular edema diagnosis and laser surgery to stop it from getting worse. For a Type 1 with a past of diabulimia and emotional stress of living with a chronic illness. For a Type 1 who is scared of being a victim of dead in bed syndrome. For a Type 1 who deals with serious hypoglycemic episodes and the consequences of them.

The disease is invisible. So are the battle scars.

I’m worried that if he sees me as healthy, what does the public see in us?

  • Healthy and therefore less in need of support or research for a cure?
  • That the majority of us live long lives and therefore don’t need to focus on eradicating this disease?
  • Not living on borrowed time because we can “manage” what we ended up with?

That we’re fine?

We aren’t. Except not everyone can apparently see that.

Even other people with diabetes.

 

 

 

I'm Here To Pump…You…Up…

DumbellWhen I think of steroids, Hans and Franz comes to mind first. Then a guy that I knew in school who took steroids to make himself supposedly look like a better bodybuilder, but only made him look like a complete jerk. Then the whole discussion of steroids and diabetes…

And then I’m dizzy.

I’ve always been a “no way am I going to take steroids!” because I don’t want to deal with the “just how much insulin will I have to take to keep my blood sugars within a normal range” factor. I even refused steroids after the birth of my daughter because I wanted to bask in the glow of her rather than my insulin pump light. But I changed my mind last week. Here’s why:

My shoulder still hurts. Stupid frozen shoulder. Adhesive capsulitis. Whatever you want to call it. The manual manipulation under anesthesia and physical therapy worked for a while, but it’s back to being a constant ache and still wakes me up at night. A visit to a new PCP after moving to get non-narcotic (but still heavy) pain meds refilled was a bust (in more ways than one, but that’s another tale for another day), so I schlepped it over to a new orthopedist for a consult and advice.

He was sympathetic after examining me, even wincing a little himself when he cranked my arm a little too far and I yelped like a bichon frisé (That’s the epitome of yappy dog to me, so I apologize if you have one. They’re cute and adorable…and yappy.).

“Wow, I can’t believe you’ve been living like this,” he comments. (Super D-Girl, that’s me. The D obviously stands for dumb.)

“Yeah, well, I’ve been rationing out Tramadol at night to keep it from getting too bad, but I’m figuring that I’ll need physical therapy again.” I roll my eyes, because while I liked my last physical therapist, it’s a huge time suck going to PT. (Please don’t start the lecture on what’s important and taking the time to do this. I’ve already had that from at least three people…)

“Look, let me ask you a question. How controlled is your diabetes?”

I glance slyly around to see if I’m on camera. Will I win something with the right answer?

“It’s controlled, which is a subjective term.  Why?”

“I could give you a cortisone injection into your shoulder which will help with the pain and the inflammation. It won’t help with your blood sugars. You’ll need to do physical therapy and we’ll reassess in six weeks. If it doesn’t work, then it’s surgery and this time, I’ll go in and remove scar tissue.”

I sigh. I didn’t want to do the steroid thing, but my back (or my shoulder) is up against the wall. I want to be able to do things with my kid and not feel like a ninety-year-old woman (looking fine for ninety, but…). I don’t want surgery, especially arthroscopic.

I nod.

The nurse plunks me down facing my daughter, who is up until this point, enthralled with the iPad. (Any port in a storm, right?) The doc steadies me, a numbing spray hits my skin and then…

“Ohhhh…..myyyyy….goooddnnnesss…..that……HURTS.” I clench my teeth and think of England. The Kid looks up at me and quips:

“Deep breath, Mommy.”

The tension is broken. I smile and while the needle hurts like a son of a bitch, I’m reminded that I have a smart toddler. I had forgotten to breathe.

Over the next twenty-four hours, my CGM and pump tag team my blood sugars. I am a little higher than what I want to be, but still under 200.  Gosh, I say to myself. This isn’t so bad.

On Saturday night, all hell broke loose.

I started temp basaling at 150% with correction boluses. Three hundreds. Two hundreds with megadoses. Temp basals go up and blood sugars go down, then creep slowly up..up…up.

But my shoulder hurts way less than it did before. Physical therapy begins tomorrow.

I just can’t decide if I’m Hans or Franz.

(Franz. Going with Franz. Yup.)