Monday, March 3, 2014

Best of the Betes Blogs: February 2014

It's my first time to host Best of the Betes Blogs!

February was quite a month for our community - with 2 awareness and advocacy initiatives at full throttle: Spare a Rose and Diabetes Art Day. A lot of wonderful posts surfaced this month and I am happy to point you to some great ones.
Best Use of Humor
Moira of Despite Diabetes: "Those questions we all get..."
I can't wait to use some of these suggestions in her handy guide for answering ignorant questions.

Best Vlog
George of Ninjabetic: "Back to D Future"
What would you tell Dr. Banting about living with Diabetes in 2014? How do you think he'd respond?

Best Recipe
Katy of Bigfoot Child Have Diabetes: "Waffle Factory Tour"
Katy and I are both going through the pangs of learning how to provide GF foods for our kids. And she is baking in bulk. This waffle recipe is low carb and tasty, too? Sign me up!

Best Use of Photography
Stephanie of robotPANCREASattack discovered a cool piece of street art that she had to share with us.

Best Advocacy
Yours Truly of Sweetly Voiced: "Snickers"
Well, this is awkward. If I didn't really REALLY believe in this post against bullying people with diabetes, I would never choose my own post for an award, but several people nominated it, so I'm just kowtowing to the fans today, okay?

Best Non-D Related Post
Heather of Unexpected Blues: "...Why I'll Never Be a Successful Writer"
Heather may feel like she's insulating herself from us with her gorgeous poetic imagery, but I always feel she lays herself bare with it and I adore her for it. Her metaphor of drowning in this post is one of the most beautiful things I've read in a long time.

Best Post by a Type 1
Meredith of With a Side of Insulin: "The Truth About Diabetes"
Meredith speaks to the fundamental truth about what it's like to live with an invisible and awfully temperamental illness.

Best Post by a LADA/ Type 1.5/ Not otherwise specified
Katy (again) of Bigfoot Child Have Diabetes: "Auto-Correct"
Katy gets a nod in two categories this month, which shouldn't ordinarily happen, but this is no ordinary situation. I really related to how she describes low blood sugar and my heart went out to her that it's from a perspective that a mom of a PWD doesn't ordinarily experience it.

Best Post by a Type 2
R.C. at The Fat Side of the Tracks: "What Do You See?"
A plea to HCPs to see the person and the effort...and not just the numbers.

Best Post by a Type Awesome
Wendy of Candy Hearts: "2014 Animas National Sales Meeting: I Was There for 15 Minutes"
I love a good comeback kid story. And if this opportunity helped Wendy find her words again, it was 15 minutes of awesome.

Best Story of a D-Mistake
Victoria of Victoria Cumbow: "Miss Manners got it right."
It wasn't Victoria's mistake, but she highlights where the Diabetes Online Community may have misstepped by not remembering our own manners when faced with outrage over an etiquette column.

Best Motivational Post
C of C's Life With D: "Why?"
Our CDEs devote countless hours of education and preparation to spend their careers helping people with diabetes succeed...but they can't get no respect. C asks us to think about the double standard we impose.

Best Diabetes Art
Reva of Type ONEderful: "Diabetes Art Day 2014"
This was certainly a tough category this month now that Diabetes Art Day has moved into February. Reva's 3-frame depiction of low blood sugar left me just sort of staring at the screen with my mouth open. Yes. Yes, exactly.

Best Comment
Linda made a comment to Katy that summed up what all Parents of PWD deserve to hear.

THANK YOU to all of those who made nominations and to all of those who were nominated this month. We couldn't do this without your participation and your passion for writing and sharing others' great writing.

Briley ~ inDpendence
Shannon ~ Neurotic City
Rachel ~ Probably Rachel
Scott ~ Rolling in the D
Kerri ~ Six Until Me
Alecia ~ SurfaceFine
Laddie ~ Test Guess and Go
James ~ T1DMe
Jacquie ~ Typical Type 1

If your name is above and you want to add the Best of the Betes Blog logo to your blog, change all "[ and ]" to "< and >" in this html code:

[div align="center"][a href="http://www.bestofthebetesblogs.com" target="_blank"][img src="http://momentsofwonderful.files.wordpress.com/2011/06/bbblogo-final-e1309479808835.png"][/a][/div]

Wednesday, February 26, 2014

Cloudy with a Chance of Autoimmunity

Sometimes everything gets screwed up and it's all for the best.

My 2yo son Dibbs was screened for celiac disease and for celiac genetic markers at the same time his big sister was in July 2013 through a free screening session by a team from the Center for Celiac Research out of Mass General Hospital for Children.

In late August, we learned in a letter that Dibbs was negative for antibodies and that Sweetie was positive. By the end of September, we had her official biopsy-confirmed diagnosis. By the end of December, we had her (and my) genetic test results, but not his. I wrote to and called the research clinic and explained my urgency to know whether or not my baby also had the gene we have. They told me that, as soon as they had more testing kits arrive, they would expedite his test results and email me since his sister was a confirmed diagnosis.

But in February, I received an email saying that the original letter stating that his celiac antibody test was negative should never have been sent. They did not have any record of actually performing the test and did not appear to have a sample on which they could perform the genetic testing either. His blood sample was just not there.

Now, this is where I should say that, while I was angry to have learned I received false results, the Center for Celiac Research has been very communicative and helpful in exploring what happened. They recommended I have my son re-screened elsewhere and sent the case to a review board.

My son's pediatrician ordered a celiac panel for us last week. A celiac panel consists of at least these 4 tests:
  1. tTG (anti-tissue transglutaminase)-IgA
  2. EMA (anti-endomysial antibodies)-IgA
  3. IgG
  4. Total serum IgA
Now, the reason you need all of them is that, if #1 alone is positive, it could be a false positive if you also have another autoimmune disease (like, say, type 1 diabetes). If #2 is negative, it could just be that you don't have enough intestinal damage for it to show as positive yet. Test #3 is kind of a backup test for a different form of antibody, but it's not nearly as specific for celiac. And if you're found in test #4 to have a deficiency in the amount of IgA antibody you're able to produce, well then, you may as well just discount the whole lot of it.

For the record, Sweetie's panel results as run by Children's Medical Center (with standard reference range they gave us in parentheses):
  1. tTG IgA: >128 (normal range <10)
  2. EMA IgA: 1:80 (normal range 1:10)
  3. IgG: 1 (normal range <10)
  4. total serum IgA: 152 (normal range 46-345)
Guess where Dibbs' problem was though. That's right. A problem with Test #4. He is apparently IgA deficient. His total serum IgA clocked in at...10.

This is from the page on celiac testing at About.com:

If you have a very low total serum IgA, that can invalidate the three blood tests that rely on your IgA levels. People with celiac disease suffer from low total IgA levels about 10 to 15 times more frequently than people in the general population.

Now, Dibbs has no symptoms for celiac, we don't have a genetic result for him to know if he's susceptible, and the other three tests came back negative/normal range. So that's good, right? Except for the whole "invalidate" part. Our pediatrician has deemed the panel "inconclusive" for this reason.

IgA deficiency also, however, according to my friend Wikipedia, has "an association with autoimmune disease" with patients having "a higher risk of developing autoimmune diseases in middle age."

Well, crap. Seems the crosshairs are on my little fella as well.

But here's the silver lining as I see it.

First of all, nothing seems wrong with the boy, and of course we're glad of that. :)

Secondly, I've since discovered, in all my communication with the research coordinator who did or did not run the original test, that their clinic tests only for tTG IgA. They would never have run the total serum IgA test for this research study to know that he was deficient.

So had they actually run his sample, I'd still have received a negative result. But I wouldn't know that I couldn't trust it.

If nothing had gone wrong with Dibbs's screening, I'd have had no reason to have him re-screened. I would not have suspected IgA deficiency. I would not have understood that the Center for Celiac Research runs only the 1st component of the panel. I would not have any of the information I currently have.

But I'd have the HLA genetic marker results...which I still intend to get.

In the meantime, like I said, he's asymptomatic. I hate to think that I'm continuing to expose someone to gluten who may be likely to present with celiac or even that I might somehow increase the odds of his developing an autoimmune disease by the choices we make now, but here's the thing...

As Hubster and I always say, you do the best you can with the information you have in the moment. We are already lightyears ahead of where were with our daughter who was a year and a half older before she was diagnosed. We are already expertly prepared to deal with diabetes and celiac. And if all Dibbs is is IgA deficient (one hopes), it's mostly harmless and there's nothing to be done about it.

As Wendy relayed from Dr. Fasano in a post that gave me comfort after my daughter's diagnosis, "you can't go back; you can only move forward."

So forward we go.

Friday, February 14, 2014

Dibbs: Two Years

My baby. We decided you were terribly two about two months ago, but as of yesterday, you are official.

You are absolutely adibbable.
You are lovey, huggable, incredibly thoughtful. You are everyone's friend and Mommy's little helper, standing at the sink washing dishes (which is really just filling cups of water and dumping them).

Monday, February 10, 2014

Snickers

I like a good joke. I can even take a good joke about myself. And I know that I've laughed at inappropriate jokes. I know most of us have. But we need to talk about what's at the root of some types of our humor.

Even comedians have started to admit that there are realms of humor that should be handled differently. Not off limits, per se, but with the subject of the punchline in mind. Patton Oswalt wrote last summer about his complete 180° in understanding why he was wrong about rape jokes. Not that rape had some pristine status of "off limits" in terms of topics that absolutely could not be joked about, but this quote of his stuck with me:
In fact, every viewpoint I’ve read on this, especially from feminists, is simply asking to kick upward, to think twice about who is the target of the punchline, and make sure it isn’t the victim.
Today, for your consideration, Internet, I bring you: The Diabetes Joke.

Many of us have seen this meme. Something along the lines of a math word problem involving candy bars or cupcakes or some other decadent dessert. The question states that Bob/John eats a certain number of a certain number, so what does he have now?

Diabetes. Bob has diabetes.

It's hilarious because... Well, because we as a culture are okay with fat shaming, for one. And only fat people get diabetes. They bring it on themselves so they deserve to suffer the butt of the joke. HA. If they'd just shown a little willpower and resisted that kind of food over the course of their lives, they wouldn't have diabetes. It's okay to laugh at their lack of willpower! Laugh with me!

Whether the joke is about someone losing a foot, eating so much / drinking a soda so large that it's diabetes-on-a-plate / diabetes-in-a-cup, or feeling stuffed after a meal and giving yourself diabetes, we get it. You're equating indulgence with an extreme consequence. And it's a little absurd, so it gets a chuckle.

And whom does that hurt? Can't we just take a joke?

Just like a rape joke, a joke about an illness - any illness - places someone struggling with a life-altering, soul-crushing, debilitating experience as the punchline of a joke. I have struggled with diabetes every day for the last twenty-three years. I've been comatose. My parents nearly lost me at diagnosis. I've had hypoglycemia and not known where I was. I've been afraid I wouldn't wake up to be there the next morning for my two children. And I've campaigned for children in the developing world for whom a diagnosis of diabetes is a death sentence.

So diabetes, in general, is not incredibly funny to me.

That being said, there are still plenty of ways I can laugh about diabetes and the situations we struggle with. I follow the work of several talented diabetic comedians. I enjoy the comics my DOC friends publish in the Sunday Funnies. I share hilarious videos. Do you know where I have to draw a line though?

The line where it's funny because we deserve this struggle.

Now, this is where you'll argue, likely, that it's different because of course the OP is talking about type "TWO" diabetes. Not the kind I have.

Stop gaslighting me. Stop telling me that it's just a joke and I'm overreacting. You didn't mean my illness. You meant the other guy's illness. The fat guy's illness.

That's like telling a family fighting cancer that "It was a joke about cervical cancer, not childhood cancer. Jeez, grow a thicker skin, people."

First of all, Type 2 diabetes is not any easier than what I have, so the punchline victim is someone who is fighting an equally hard battle. In some ways, their challenges are even greater than mine. But you know what? Whatever version of a disease a person has, it's a struggle for that person who is sick. The person in the center ring. The person who is afraid, who is bombarded by media blaming them for having given themselves this disease. The person whose well-meaning GP and Dr-Oz-loving-Readers-Digest-reading family probably tells them that it can be "reversed" if they just start toeing the line, shaming them if and when they fail.

Type 2 Diabetes is a life-threatening, serious, progressive metabolic illness. It can't be "reversed." It can be well-controlled to the point that symptoms lessen - and if you want to call that a cure, that's your prerogative - but you can also be recovered from addiction for years, too, and easily slip back into the danger zone. Type 2 puts wear and tear on your body and, though you might mitigate some damage, you won't "beat" it. No matter what that checkout line tabloid headline promises you.

We even hear this diabetes victim shaming from people with my version of the disease who make sure you understand that, in our case, you see, we're blameless. My child didn't give themselves diabetes. Implying, of course, that there is a type of diabetes you can bring upon yourself.

It's a fat person's disease, so you believe. Nevermind that only roughly half of people with Type 2 are obese and those who do carry extra weight actually seem to have protection from the killer instincts of type 2. Less likely to die than the 20% of normal- or under-weight counterparts with the same disease (it's called the obesity paradox). (If you haven't watched surgeon Peter Attia's TED talk about this, go now. You'll probably cry. I'll wait.) But Type 2 is not really my specific area of expertise, so I'll move on to a related point:

We are totally cool shaming fat people. They are still a very safe target for our societal scorn and derision. They're our comic sidekicks - the jolly fatty - and we all know they (all of them, right?) uncomfortably joke about their own weight, so surely it's fair game for us, too. "Hey, I have fat friends and they think it's funny when I joke about it." That's like "I have a black friend, so I couldn't possibly say something racist."

And we're doing fat people a favor when we "motivate" them to conform to our definition of healthy, right? Because you can tell how healthy a person is just by their weight or their diet? This wonderful post on xojane titled "What's Wrong with Fat Shaming?" reminds us that "shame is not a catalyst for change; it is a paralytic." If I have type 2 diabetes and/or struggle with obesity, your joke about me eating candy bars and getting a disease doesn't motivate anything in me but self-hatred.

So maybe I just can't take a joke. Maybe I actually know people who have died from diabetes. Who have suffered at its hands. Whose family believed it their own fault. They deserved to die.

We do it to other diseases, too. The shame diseases. Lung cancer. AIDS. When you say you lost your Nana to lung cancer, people say "Oh, did she smoke?" Yes, she did. So she must have deserved to die. She must have been less deserving of our compassion, our pity. My grief must be dampened by that. That blame. Whew. That feels better. I'd hate to think she didn't kick herself enough in her final month of struggle.

Maybe your stepdad doesn't "take care" of his diabetes (that he lets you see). Maybe he doesn't tell you how scared he really is. Maybe your mother had a plate of strawberry shortcake for dinner and then again for breakfast. Maybe there's a lot she doesn't understand about her disease because access to proper behavioral education isn't available to her. Maybe she is also scared and frustrated. Maybe she's exhausted by this damned disease.

And maybe diabetes is frightening and headed for you, too (1 in 3 people will be diagnosed with it), so if you make light of it, if you joke about food comas and candy-bar-induced disease, it feels less scary.

But the joke's on you. And you may find someday that it's not actually all that funny.

My 4 Year Old

My sweet girl,

You are four years old.

We have learned a lot about you in the last year that we didn't understand before.

In July, you were screened for diabetes and celiac. Mommy and Daddy were delighted to hear that you were not at high risk for diabetes, but the celiac results we received in August were quite the shock. You were finally officially diagnosed in September and have been gluten-free ever since. You are doing great and only occasionally slip up. You announced the other day at breakfast, out of nowhere, "Gluten makes me sick." Yes, it does. You're getting it. Whew.
If I can get you to sit still for a photo, it's usually for a silly face.
You keep us on our toes and we are constantly learning how best to help you navigate the big, wide world. We've learned that your tendency to go wild in certain environments (restaurants, exhibit halls, public places, social events) is not because you're excited to be there, but because you're overwhelmed. We didn't understand, but we do now, and we promise that we will help you learn how to deal with your social anxieties.
You and Daddy enjoyed the gardens outside the Gluten Free Expo
after we needed to step away from the crowds and decompress.