Bye Felicia *Updated

*Post has been updated due to absurd threats made against me by an admin of this support group for libel and defamation. It is important to note that libel is the making of a false statement about someone and defamation is the making of a false statement with the intent to harm another’s reputation – both of which must be proven WITHOUT A DOUBT to be a lie AND, in the case of defamation, must also prove that damage has already been done to the individual’s reputation. I stand by the following post describing events as I perceived saw them – which in this case means… it’s my OPINION.

I needed a couple of days to digest the recent events on Facebook – in that support group I did not name in my last post. I didn’t want to get caught up in the drama, I didn’t. However, it’s all too easy to get swept up in a crusade full of emotional moms (and at least two dads) because – hell hath no fury like a D-mom. And now – hell hath no fury like Tara on a tear.

During the months I was a member of this private group, I noticed a common thread among them. They’re like rabid dogs when someone in the community is wronged, like when CrossFit sardonically invited the public to open a can of Coca-Cola Diabetes, or some mysterious health-related page offered an “all-natural” cure for all diabetes. They’d rant about it for hours, days… they’d flood those pages with comments and then rage some more when their comments were deleted. I felt that (translation: in my opinion) way too much emotional energy was spent on this stuff to the detriment of actual support of one another.

What I also noticed  perceived was the occasional snarky comment directed at one another – remember this is a support group – and there’d be some mild drama over some perceived judgement. I had days when I just thought – I don’t need this. But, I stayed. 

And then – Liamgate. Liam was a little 6-year-old boy recently diagnosed with T1 and in serious DKA, life-flighted to children’s hospital, suffering two seizures, and then began a promising road to recovery. The problem with this story seems to be that someone suggested Liam wasn’t real. The allegations began in this support group as someone noticed that the person who originally (read: first) posted in the support group about Liam had suddenly vanished. Given the overall temperament of these members, this had all the makings of a California brush fire. And all it takes is a little gasoline to cause a state of emergency, in the form of finger-pointing at another organization and suggesting this was all a fabrication, meant to shock and grab attention for DKA. (Which, in my opinion, IS defamation AND libel.)

While many details remain unclear and somewhat convoluted, what is clear is that this support group swiftly excommunicated the owner of the Other Organization and carried out a post aimed to discredit them (ahem – defamation… libel), and its members jumped into the thread like a pack of wolves on a deer. I was shocked at how quickly these people believed the allegations with no real facts, conveniently forgetting that one of its own was the first to tell Liam’s story. One admin for the group was particularly vocal on this thread all day long, like a dog with a bone (in my opinion). Meanwhile over on the Other Organization’s page…. the fire had already begun burning. Many, many support group members began questioning the admin there and making accusations.

Back on the support group to which I belonged – a handful of people suggested we all drop the witch hunt (actual words used in the thread) (the drama was overshadowed only by the horror in Paris), including myself but not in so many colorful metaphors. The admins there insisted this was a very very big concern because “these people” had lied about this child and it negatively affects the community and especially the integrity of their organization. (I don’t see how the latter is possible, but whatev.) This, btw, is a very, very big assumption based on nothing more than the disappearance of the original poster and Liam’s mother. Oh yeah – and the fact that some members’ investigations couldn’t turn up anyone by either of their names, which in retrospect speaks volumes about how far some people will go. 

What disturbed me only slightly less than these accusations was the subsequent blocking of comments and the removal of a handful of members from the group (a fact that can be attested to by a number of witnesses). The Other Organization was being methodically picked apart by members of the support group (including the dog with a bone) and was blocked from answering questions (fact). Another member, with an organization of her own, commented with the voice of reason and I shouted hallelujah! And exactly 60 seconds later her comment disappeared. I watched it happen. I asked, what happened to her comment and….crickets. 
Following this, I noticed a part of this thread where the Founder of the support group suggested to a member (who questioned why this whole Liam story was causing so much drama), that if she doesn’t feel supported here or that it’s not the place for her, then “by all means get your support there.” WHAT?! This certainly doesn’t sound very supportive at all, in my opinion.

What happened next was the icing on the cake. As I had pm’d Founder before, I felt comfortable reaching out again and asking if anyone knew what was going on, that it was really disturbing and – apparently this would be the nail in my coffin –  that I was concerned because I had been in contact with the Other Organization. Her response was that everyone was encouraged to do their own investigating, and she was careful not to place the blame on anyone. (<<Does this sentence sound like defamation?) I also mentioned this big meeting I was attending on Saturday and thought it had great potential to reach other states as well. She encouraged me to “press on” and suggested I “look through the files, there is awesome info in there!” However, the very next day I learned that I was no longer in the group, and that she had personally blocked me. I was stunned. What had I done?

Nevertheless, I’m still over it. They made my decision for me and, like we always say, there are no accidents. Too much drama in the group and, frankly, too many members. And hundreds are very new to diabetes. After a few days distance, I’ve had time to sift through my thoughts and doubts. I don’t know if Liam is real either – whether his mom was overwhelmed by all these people in the group sending her messages and asking questions, and didn’t want her privacy invaded, or if Liam was an invention by someone who had something to gain by tarnishing another’s reputation. In any case, I. Don’t. Give. A. Damn.

Whatever the facts may be, this I know –

Diabetes is a multi-million dollar business… pharmaceuticals to physicians, pump companies to diabetes supplies and accessories for making management easier… and then there’s the newest incorporated nonprofit group selling merchandise with their name all over it. This IS a fact, so I’m allowed to say that. Yes, I’ve done a little research myself recently.

The Founder is not the “dog with a bone.”

Support groups can be a great source of comfort. Make sure you find one that gives you that, and where you know that no one (under the “God is good” mentality) would ever exclude anyone, or suggest you leave.

In my last post I likened the members to sheep – and that’s just not right, so I apologize. They are not sheep. I believe they are nice people who just got caught up in the storm. I just hope they don’t drink the Kool-aid. 

While I was working on this update, I received yet another message from the admin threatening legal action for my defaming the Founder and/or their group and suggested that I review the law again (apparently the above definition from my attorney is wrong) because I am “in violation.” 

I also want to state that this support group had use of my daughter’s image for promotional videos for Diabetes Awareness Month, an image they had taken from the private page where I shared it. However, I honestly did not remember consenting to the image being imprinted with the logo of a certain research foundation and its insinuation that we are affiliated with it. Further unsolicited messages from admin were screenshots of my supposed consent, in argument to my allegations. Regardless, since I was blocked from the support group I was uncomfortable with their use of her image out of my consent and control. I sent multiple requests to have it taken down – all were ignored and one of the admins chose to block me rather than respond. It was not until I contacted You Tube to address the issue that I received a response from one of them. Her initial (THIRTEEN DAYS after my first request) response was that they would comply with regards to the image but threatened a libel suit for the “vile things” I wrote in the original blog post. I was told to remove the screen shot identifying the Founder along with her words, and that if my opinion openly defaming a person is not taken down, their organization will have no choice but to proceed legally.

Being a peacekeeper by nature, I have removed identifying information so that I can continue to move forward with what I love and what is far more important. I absolutely hate drama and will not be a party to it, but moreover – I will NOT be bullied into retracting an entire post that doesn’t name anyone or any group or organization. That is a violation of my 1st Amendment rights. This is the last post about this matter. 

Only best wishes to all the parties involved.  We need a Cure NOW.  

What I Did While I Was Gone

Did a whole bunch of writing. I began one morning feeling royally peeved over that drama and wrote another post about it. Inspired by NaNoWriMo (look it up, people), I did some writing for my “novel.” I also pm’d another admin for the group respectfully asking that my daughter’s photo be removed from their videos of “T1 Warriors,” because I’m not comfortable with her image being used to promote their agenda – particularly if I am blocked from the group. I didn’t get a response. It’s now a week later and I just sent a similar message to a different admin– so hopefully I will be heard this time. I can assure you I will not be ignored.

Went running. Nephew1 and I went for a run on a glorious morning and I was pumped because he motivated me to take longer strides and run faster… that is… until his stamina ran out around 0.62 mile. I marveled at how running with each of my nephews is like night and day: one I can’t keep up with (Nephew2 recently surpassed his own PR at 5:23) and the other can’t keep up with me. Once he started walking, I’d dance around him every time I passed him pointing and singing – 18…46, 18…46!

Worked. I worked a cooking class at the restaurant, the style of which has changed since my earlier days… the class is held entirely in the kitchen now, including tastings and wine. There was this woman who used to work for my mom in her other restaurant some 30 years ago, who decided she could help me serve the tastings and clear the plates, and otherwise was very loud about her preferences. She pushed my last button when she suggested in a slurry, wine-infused voice that the sous chef and I were an item. I suppose it’s an easy mistake to take mutual eye rolling for “making eyes” at each other. At least I got a leftover half bottle of wine – which I heartily polished off once I got home to a sleeping house.

Had an impromptu nap. Before another ride to PA I fell asleep on the couch for about an hour before the kids got home from school. It was awesome.

Found a remedy for fruit flies.  The final straw was being assaulted as I sipped my wine. It flew up my nose with a startling rush not unlike snorting uncut cocaine and a moment of confusion where I wasn’t sure whether to blow it out or jump around slapping myself in the face. Our fruit fly situation continued to get worse, and I went on a mission to find the source. Starting with Nephew (hereafter to be known as “Neph”), since I had it on good knowledge that my son wouldn’t be caught dead with anything but processed food in his room. I have an empty cranberry juice bottle with some leftover cheap wine (translation: wouldn’t drink it if my life depended on it) and an extremely ripe strawberry in it, sitting on the counter with a paper funnel on top. So far I’ve trapped a dozen or so of the little bastards.

I produced miracles. I got Pi to the vet for her surgery by 8 a.m., drove Ava back home to catch the bus, and then took Owen to his orthopedist appointment by 9:30. I was so proud of myself for pulling all this off without a single moment of stress and everybody was on time (!!) – which, if you really know me, is unheard of. And then I saw Ava’s medication sitting on the counter and swore the short list of profanity, hopped back into the car and drove to school to deliver it.

Worried incessantly about our old girl who is soon to be 15, who had to have a necrotic growth on her side removed and had a complication and needed drains put in. She was also very weak, and so had to remain in hospital for an extra 2 days. I sat with her for an hour the day after surgery on the floor of the kennel, watching these kittens across the aisle losing their shit over the newspapers lining their cage. Highly entertaining for me, most unfortunate for Pi, who isn’t so fond of cats to begin with.

Went to school. American Education Week ended Friday, the day we were invited to school to watch our kids learn. Instead I watched my daughter practice for an upcoming choral concert and then build a volcano with her friends for a science project, which has still not erupted (no predictions on when she’ll blow, either).

Attended a Very Important Meeting conducted by the Maryland Department of Health and Mental Hygiene and the Maryland Department of Education to discuss school diabetes management. Lots of very important peoples (including a U.S. Senator, who was in my work group), lots of very important things learned, and an opportunity to have my voice. I’ll be blogging about this later.
Worked again. Very anticlimactic. It was busier than f@#$, and the kitchen was running horrifically a bit behind, but I got to meet the man who could’ve been my father again when he told me they used to date, how they both owned Triumphs,  and how “cute” she was in high school. Some things are better left unsaid, ya know what I mean?? I’m always surprised what a small world our restaurant revolves around – how that 6 degrees of separation is damn near incestuous.

Obviously, spent a LOT of time in the car. Which is why on Sunday I…

Slept til 1:00. There is nothing more luxurious and slothful like being comatose for nearly 12 hours. It was well worth it, even with all the hoopla in the kitchen after The Queen arose.

All in all – it was a busy and not entirely unproductive week. Without Facebook. I didn’t feel any happier, or any less so, just indifferent. I missed the easy and convenient contact with my friends who are too far to see very often. I didn’t miss the drama which, apparently, went on without me… as more executions were handed out without a fair trial.

Today I will turn the notifications back on, and slowly let Facebook seep back into my life. 

A Few of My Favorite Blogs

Today I’m sharing the top four bloggers I currently stalk. Well, I don’t really stalk them, because that’s just too time consuming and plus they all live ridiculously far away from me. Especially Texas – which is really, really big so I’d be driving for like, weeks just to find her town, and even then she now lives in a closed-gate community because of people like me who drive famous bloggers to medicate and hire bodyguards.  

Anyway, the first blogger is really, really hilariously funny in a big Texas way – no other writer has left me laughing so hard I’ve cried, or managed to annoy my sleeping husband while I tried to read quietly to myself. She is not to be missed and, because her humor can’t be contained to just blogging, she has published two books which I highly recommend: Let’s Pretend This Never Happened and Furiously Happy. Jenny Lawson is TheBloggess.
The second is a lovely lady from across the pond (this is unconfirmed but I feel safe at guessing that it’s somewhere across an ocean from the United States) who writes rather generously about her sexual adventures and relationships. Obviously I’d have better luck finding an elephant in the Antarctic, and I can’t go around staring at every woman’s breasts trying to identify her (see Boobday). This one might not be for everyone of course, but it’s not all sex, all the time. I love her sincerity, her attention to detail, and her writing style – it’s what drew me in from the very first time. I found her in the comments on The Bloggess over a year ago, and decided to check out her blog and I’ve never left. Definitely rated M for Mature. I suggested she write a book based on her experiences, but so far Ann St. Vincent hasn’t started one.

The third is our neighbor to the north in this very famous place with a lot of falling water – where I’ve always wanted to go and am dying to take a long weekend with Todd cause I hear they have great casinos too – and, being the tricky Gemini I am – would be obliged to attempt to locate this gentleman so we could f@#$ with him (figuratively speaking, of course). Though now that I’ve said this out loud, he very likely has already alerted border patrol to be on the lookout for me. You’ve BeenHooked reveals the good, the bad, and the ridiculous of the hospitality world, as well as some very important proverbs … and will definitely make you think twice the next time you plan a wild weekend in a hotel. His book, The Bellman Chronicles, is on my Christmas wish list…and promises reading you won’t be able to tear your eyes away from. Kinda like watching Caitlin Jenner.

The fourth lives on the west coast somewhere that isn’t California, but I can’t remember if it’s Washington or Oregon because my brain has taken a permanent leave of absence. I’ve been to Washington so no immediate need to go there, but Oregon would be nice – since we have family near Portland and also a fellow D-mom who isn’t a snarky bitch that I’d love to meet in person – but again, Ned Hicksonmight be slightly inclined to file a protection order if a pair of strange Easterners showed up at his door and invited him to dinner. Nevertheless, his humor is priceless and his writing is honest and entertaining in a non everybody-loves-my-blog-now-so-who-cares-if-it’s-interesting-anymore way. He’s currently in the running for best blogger and no one deserves it more. He’s the type of guy who’d be the big brother you always wanted. He too has published a book, Humor at the Speed of Life, which is on my Hanukkah wish list (because I can’t ask for everything on my Christmas list. That would just be rude).
The order of these is not indicative of value – but rather the order in which I discovered them – each respectively by way of the blogger preceding him/her. Funny how that works.

Happy reading!!!
**Disclaimer: I am not being compensated for my recommendations, although if any of them would like to invite me to dinner….I like Italian food and sushi. Not necessarily together. And Wine. Wine is good. But if they only have tequila, I’ll bring the limes. I’m easy like that.

Reading CoffeeMate

Todd has many talents (some I cannot share) and this morning he read my fortune.  You’ve heard of people reading tea leaves? Well, prepare to be impressed….this guy can read CoffeeMate.

I poured this white powdery non-dairy creamer into my empty coffee mug and asked him if he could “read” it, and tell me how my day would go.

The day is looking smooth… just one little wrinkle…a light spot….but mostly smooth…. You’re gonna find love today and – is that a heart or a buttcrack?  I’m not sure…

Isn’t he amazing??!

When I’ve Had Enough

Many of you who know me personally know I am passionate about Type 1 diabetes. The last 2 years have seen me more motivated than ever to take a stand and advocate – to make changes – to do something. I wanted to participate in the legislation that encouraged medical personnel to screen for, and educate patients about, the signs of Type 1. There was a woman who technically is a “local” to me, who became very active in PA and as I understand has make some serious headway. I thought as a now resident of Maryland, that I should step up and move the cause forward as well. Enter stage left – a couple of organizations who are motivated to push forward the symptoms of Type 1 and spread awareness worldwide.

It occurred to me early on that to organize individual efforts in this arena could potentially make “us” – the DOC (diabetes online community) – appear disorganized, with so many individuals launching their own campaigns, and that alone can spell disaster. It also occurred to me that some people may possibly be interested in owningthe glory for all of this advocacy. Given my primary focus has always been on a cure, stepping into the DKA awareness movement was new to me. But the horror of several children this year alone being dismissed with flu-like symptoms (or some other common illness) and later dying left me feeling angry and sad that this could happen in 2015. And, truly believing in the Test One Drop campaign (with its brilliant, unique, and simple brand), I felt it best to step back and wait to see what I could do under its umbrella.

I still don’t think I am wrong. However, over the weekend, on the one day we were supposed to reach the most people worldwide – Islamic a-holes stole our thunder. And then it came to light that a recent horrific story about a little boy in DKA (diabetic ketoacidosis) might be a fabrication.  I awoke Saturday morning to a virtual lynch mob of parents who were eager to uncover the truth and all too eager to place the blame on someone. I was shocked and perplexed. The online support groups are supposed to do just what they say they will – to support

However, this particular group was filled with sheep pointing fingers and digesting the limited information with hatred and disdain. I wondered how these seemingly educated people fell in line like dominoes behind the words of a few, quick to blame and equally quick to jump on the drama train. These parents, mind you, have very limited time and a serious lack of sleep to their credit – so perhaps they, too, are a little too trusting of what looks good in spite of their lack of adequate proof. But really – who has time for this? Who was checking their children’s blood sugars all day for them – while they sat on Facebook behaving like the very trolls they’re seeking to expose? 

I got sucked into this drama early Saturday, and it consumed my day. By the time Todd and I left the house to get my rings sized (because I now have arthritis and with the swelling I’ve gone up a whole ring size) I was preoccupied and melancholy. I had placed my faith and trust in a complete stranger with a brilliant idea, who was being annihilated online by another group of complete strangers I have also trusted to give support and understanding. I can’t even begin to tell you what the impact of all this has been.

I don’t get depressed, but let me tell you – this whole shit storm has left me feeling weak and sad. Being the parent of a special needs kid – no matter what their needs – is a full time job. It takes a financial toll, a physical toll (for those of us who wake up throughout the night to be sure our child is still breathing), and an emotional toll. After a much-needed Friday night out – I learned that I’m not the only mom who drinks. We need an escape sometimes that only alcohol can provide. Nevertheless, the support we get is priceless. Unless it is compromised.

And yesterday my generalsupport network was compromised. I can’t tell you what that feels like, and I’m not going to whine about it. It is what it is. Several months ago some other drama occurred that made me question whether to stay in the group, or move on. I chose to ignore all the warning signs, and pressed on. Today, I’m feeling extremely conflicted as I decide if I want to continue on as a member of this group that was so eager to lynch another DOC member. I have some insider knowledge, and I don’t believe that either party had any malicious intent, but many signs point to a handful that were all too eager to throw one of their own under the bus. People were blocked and removed from the group, and I wondered – what would I have to say that would make me get blocked?  And why the F@#$ do I care??

My preoccupation with this drama has stolen me from Todd, and from my children. I’m distracted and moody. So – I’m now having a look at what I want as I move forward, looking toward another career opportunity, and what exactly I want to do in terms of advocacy. This morning I wanted to shut down all communications, and stop advocating altogether. All of my friends and family can see my posts – it’s up to them to pay attention or ignore. Isn’t that enough? Maybe I just need to readjust my focus.

As a parent of a Type One child, I can assure you that bullshit is not an acceptable part of this package. Having a challenging and sometimes obstinate 10-year-old T1 has tested the limits of my sanity and many times made me question my ability to be her mother. I planned this whole other post about our summer vacation with my mom – how it transpired and how it ended – but lost my motivation amongst a myriad of distractions.

My daughter was not only demanding of specific accommodations that were completely ridiculous (like the outrage of an orange wedge being served on the side of her Shirley Temple), but she forced me to be the food police (a job I loathe more than washing shit off the dog’s ass). She pushed every last button I had left and, in one late night call to Todd from the hotel balcony, made me swear I’d never vacation with her again.

On the very last day, with her sugars running nearly 300 at breakfast, I needed to change her insulin pump site. She, as any kid who’s had enough of this stupid f@#$ed up disease, gave me a rash of shit saying how much she hated diabetes and how it’s ruined her life. At that moment, locked in the semi-privacy of a public restroom stall and trying to change her site, the tears I never cry over T1 started falling silently over my cheeks. She asked me then what was wrong, and all I could say was, I’ve had enough. A brief moment of surrender to the devil who refuses to leave our lives. I’m done. I just can’t – anymore today.

So many people have praised me for being strong, for being a great mother, for having to be and do the unthinkable. While I don’t want to sound ungrateful, this year has me feeling less deserving of the accolades. Something snapped in me earlier this year. I began to feel more emotional about this diabetes thing, losing my shit and letting these weird things called tears fall from my eyes. After 8 years, it’s as if I suddenly realized what I’ve been doing, how difficult it is, and how hard it’s going to be as we move toward adolescence. How hard it’s going to be for my daughter. And  as of this weekend, I’m quite frankly fed up with diabetes. I don’t feel like talking about it anymore, I don’t want to hear about it anymore, and I don’t want to read about other people’s T1 troubles anymore.
And so – on this Sunday evening – I know a few things:

My daughter has Type 1 diabetes and is, at this point, not curable.

Every special needs parent falls into a rut at some point, and I’m there.

I don’t want another child to go misdiagnosed, or undiagnosed.

I will do the JDRF Ride for a Cure – 100 miles – next summer, as planned.

I will continue to write.

My life is blessed and I am not afraid.

There will be a cure for T1 in my lifetime.

I’m leaving Facebook for the next week, to see what life looks like without it. (This is not because of the online drama. Last week a radio station stated that people without FB are happier. So – an experiment for me.)

I want to nurture my real-time friendships.

Today was a rough day. Too much crap happened in such a short period of time, and I’m toast.

You all will be here when I get back. J

Keep sharing the signs. You just might save a life.

Yes, She CAN Have That

Last weekend was Halloween. Like all the other holidays at school, there is always a party or some sort of acknowledgment which often includes the passing around of goody bags by some overachievingwell-meaning mom kid. Ava came home from school on Friday upset about something. Someone handed out goody bags for Halloween and said, “this one is Ava’s.” Ava’s goody bag contained no candy, just stickers, a pencil, and eraser, etc. It was the only bag with a name on it, so it would be clearly designated as hers.

This isn’t the first time we’ve encountered ignorance and misconceptions around Type One diabetes. Back in our old school, one little girl – a real sweetheart and true friend to Ava – would always give her sugar-free candy. Now, I didn’t blame her. I knew that she most likely went home and told her mom who, in an honest effort to be caring and considerate, went out to a local candy store and bought her a special bag of sugar-free gummie bears just for her. I considered writing her a thank-you note and gently explaining why it wasn’t necessary, but I never did get around to it. And, in case you’ve never heard about the gastrointestinal apocalypse that occurs after eating too many of these sugar-free gummies, trust me when I implore you to just throw them away. (If you must – Google it or click here for the Amazon review.)

Many Type 2s are managing their diabetes with medication, diet, and exercise (read: NOT insulin) – translating to low-carbohydrate intake and definitely reduced sugar intake, which is the primary reason for the plethora of sugar-free food options on the market shelves today. You may recall me saying previously that Type 1s inject insulin to cover all foods they eat (the few exceptions being food without carbs – perhaps for a later post). This is called an insulin-to-carb ratio. Type 1s add up the carbohydrates in the foods they plan to eat and use this ratio to determine how much insulin to inject. This is called a bolus, by the way.

Anyway, did you know that sugar-free foods contain carbohydrates? Well, they do. This means that those sugar-free candies still require a bolus for a Type 1. Now – you’re the parent: Would you rather feed your T1 chemically sweetened candy that she’ll need to bolus slightly less for, or give her full-on real-sugar candy? This one is a no-brainer for me.

Misunderstandings about what Type 1s can and cannot eat abound. There’s a meme circulating in the DOC (Diabetes Online Community): “Things T1 diabetics cannot eat: 1. Poison. 2. Cookies with poison.

So, what can people with Type 1 diabetes eat? The uncomplicated answer is – Anything that you can eat.

Now, that’s not to say that they don’t have “issues” with foods high on the glycemic index (Google it), and high-fat foods. We in the Type 1 community frequently lament the after-effects of pizza, pasta, cake, and ice cream on blood sugars. Does Ava eat this stuff? Yes. Do I spend the entire night awake and correcting her high blood sugars SIX to EIGHT HOURS after she’s eaten pizza? Yes. Do we eat pizza often? No. Why? Because I need my sleep…duh. (Not to mention the harm of high blood sugars.)

Oh – and chocolate too. Ava loves chocolate as much as her momma does. And she eats it – but again – not too often. Ava eats everything. Because a) I want her to live a normal life, and b) because I give her insulin for it anyway. Chocolate, however – much to Ava’s disappointment – is NOT helpful for lows (low blood sugars). Why, you ask? Because chocolate contains fat – which actually slows down the body’s response to sugar (translation: lows can continue to go lower). Lows need a fast-acting sugar… think Smarties, hard candies, juice.

Sure, there are foods – including those already mentioned – that I’d prefer to limit or avoid. But shouldn’t every parent want to limit their child’s intake of fat and excess sugar? I can tell you that we already know that Ava’s cholesterol is on the high end of the range, and we’ve known this since she was 3 years old. And so – she’s on a heart-healthy diet. But again – shouldn’t EVERY child be on a heart-healthy diet?

Okay, all that being said, I do appreciate everyone’s heartfelt gestures. I sometimes use those moments to educate, and sometimes I’m just too tired. But the love is felt, you can be sure. Ava – she’s ten – so she takes it a bit harder…but I have told her it’s a two-sided equation. If she wants the candy (literally and figuratively), she has to dispel the myths. She needs to learn to advocate, if only for herself. Needless to say, she’s still very private about her diabetes and probably always will be. I’ve offered to come talk to her class and, just as in every year before, the answer is always no.

So –what did we learn today?

Yes – She can have that.
And – She takes insulin for all her food intake. (For all intents and purposes, for the novice and unbaptized person to understand.)

Thanks for reading. And do please share. Knowledge is power.

Not Your Grandma’s Diabetes

This is an umbrella title – not meant to offend, but to make the point that Type 1 diabetes is NOTType 2 diabetes. In the early days of Ava’s diabetes, many people I talked to would say, oh! My granddad has that. Or, my whole family has diabetes. (Yes, she really said that.) Others asked me, so did the doctors say when she’ll grow out of it?

So, let’s review. Type 1 diabetes is an autoimmune disease. The process that starts it cannot be stopped, slowed down, or reversed. You cannot outgrow Type 1 diabetes. Symptoms at onset are similar to those of Type 2, yes, but that’s where it ends. Because…

Once symptoms present in Type 1, they cannot be ignored. Once the autoimmune attack on those cells that make insulin in the body begins, there is no weapon in any arsenal that will halt its progress. This is an unfortunate war where the enemy wins, every time.  And it wins fast.

So, as I’ve said, you cannot ignore the symptoms because Type 1 diabetes will march on until you take notice. I wrote our story several years ago. Recapping – I noticed 2-year-old Ava emptying sippy cups and saturating diapers for about a week. She slept in my bed and there were at least 2 nights where her diapers overflowed and the bed became wet too.

There was also a moment when she was in the bathtub where I looked at her tiny frame and thought she looked thin. She was thin – how could a mother miss that?? And still… I racked my brain. What could this be? What is it that causes thirst like this? I didn’t want to think too hard. I tried to put it out of my mind, and not be that hysterical mom – you know the stigma of the hysterical mom doctors roll their eyes over?

But, Type 1 diabetes works fast. Symptoms can only be ignored until the emergency presents itself. And, it will. In our case, on the last day she was extremely lethargic (which, left untreated, becomes coma, or worse) and then she began this rapid, shallow breathing. These are classic signs of diabetic ketoacidosis (DKA). Her tiny body was thirsty and urinating out the ketones(a toxic buildup in the blood as the body is losing its ability to convert sugar into energy) constantly, and when that didn’t work – her breathing became rapid and shallow in yet another effort to expel these ketones. (This is the “fruity” or “acetone” odor on the breath.)

We were extremely lucky to have gotten her to the doctor that day, and that our pediatrician knew the signs and tested her blood sugar with a simple finger stick in her office. She knew immediately, and she sent us to the ER directly. Ava’s blood sugar was 416 (normal is 80). She wasn’t out of the woods yet – as she was in DKA and thus required the constant monitoring only the PICU can provide. But 24 hours, a dozen blood tests, multiple pupil-checks overnight, and God-knows-how-many-units of insulin later – she was sitting up and the color had returned to her skin.

Not every child has been so lucky. This year I’ve seen tragedy strike several times across the nation. These tragedies could potentially have been avoided, had doctors not assumed these illnesses were just a virus or flu and had they just performed a single, simple finger stick test.

In January of this year, a little girl named Kycie began complaining of headache. On Monday, she said her tummy hurt and she threw up. Assuming it to be a bug, her parents gave her fluids and she slept all day. On Tuesday, her brothers also began complaining of stomach aches and sore throats. On Wednesday, her mom took 5-year-old Kycie to the doctor, who gave antibiotics for strep throat. On Thursday she was much worse. On Friday, she went back to the doctor and then to the ER, only to be life-flighted to a children’s hospital where her blood sugar was 1148.

On the way to the hospital, Kycie suffered a seizure, and then another one when they got there. She became unresponsive and an MRI later showed that her brain had herniated into her brain stem, and she had extensive brain damage. If she survived, she would be severely handicapped. Kycie didn’t survive.

There are countless stories of children being misdiagnosed with viruses or flu at their primary care providers, only to later become very sick and end up in the emergency room with the diagnosis of Type 1 and DKA. This is why many of us are campaigning for more awareness of the symptoms and for doctors to perform a simple finger stick test at the very least when children present with illness (though some are pushing for legislation to have routine screening for Type 1 diabetes).

You can shove your head in the sand and shrug it off – I don’t know anybody with Type 1 diabetes, or, it will never affect our lives. But, the fact is that Type 1 diabetes is on the rise (affecting both children andadults) and no one knows exactly why.

According to the JDRF, there has been a 21% increase between 2001 and 2009 in the number of people under the age of 20 with Type 1. Approximately 40,000 are diagnosed each year, and it is estimated that by 2050 there will be 5 million people with Type 1 diabetes – of them, about 600,000 will be children.

So, what can YOU do? Please know the signs and symptoms of Type 1 diabetes AND share them, which are

  • Extreme thirst.
  • Frequent urination (including bedwetting)
  • Drowsiness/lethargy
  • Fruity (or acetone) odor on the breath
  • Sudden weight loss (even with increased appetite)
  • Abdominal pain with or without nausea and/or vomiting.
  • Heavy or labored breathing
  • Stupor or unconsciousness

There are a handful of grassroots organizations working hard to bring awareness to this life-threatening disease – Test One Drop’s  mission is as simple as its name implies. Testing just one drop of blood with a glucose meter is a quick and inexpensive way to detect the onset of Type One diabetes before diabetic ketoacidosis (DKA) can take hold. 

Test One Drop wants you to know that undiagnosed or misdiagnosed Type 1 diabetes can quickly become life-threatening, sometimes in less than 24 hours, and even fatal.

Unfortunately, many pediatricians do not routinely screen patients for diabetes – such as the finger stick test with a glucose meter – and so, while others are trying to organize legislation for such screening and/or education of parents, it falls on us to know the signs and request the test.

Test One Drop also shares signs and symptoms of Type 1 often unnoticed, but usually present before diagnosis:

  • Headaches
  • Extreme hunger (even in the presence of weight loss)
  • Unintended weight loss
  • Irritability or mood changes
  • Fatigue and weakness
  • Vision changes, or blurred vision
  • And two others I, myself, was unaware of:
  • Itchy skin and genitals
  • Vaginal yeast infections 

Again – please note the signs and symptoms. Share them. You just may save a life.

Thanks for reading. We’re all pressed for time and I try to be concise and short, but there was a lot to this post I needed to include.

I Want You To Know, But I Don’t – A Guest Post about Type 1

I  planned to post about signs and DKA today, but I read this post on a closed FB group for parents of T1 children, and it brought tears to my eyes. I don’t often cry over T1 diabetes, because I have to be strong – for me and for my daughter. It was so beautifully written – I truly could not have written anything better. So, today’s blog post is brought to you by Michell Daley Cheney.

I want you to know I never intended to be an all-diabetes, all the time channel. I get it, it’s all I talk about. I wish I didn’t have to.

I want you to know about this disease that has no cure and gets little to no media attention. Even the President makes diabetes jokes. That which puts us at risk is a joke to the public.

I want you to know, but I don’t want you to know firsthand.

I don’t want you to know what it feels like to be told your child has a disease that could kill them if you stop being vigilant for a while, if you forget to pick up a prescription, if mom and dad both gave insulin by accident trying to help one another, if their body decides to work just a little in the middle of the night, if you don’t do that 3am check. If you are too tired. And we are. We all are too tired.

I don’t want you to know what it feels like to hold your 3-year-old down while they scream so you can give them another shot, five times a day, or whenever they eat something. If they sneak a cookie, you will have to give them another shot, and they will feel punished for eating. Every time. Every day.

What it feels like to have your little one refuse to give you their tiny hand because they are afraid you will stick a needle into it like you do ten times a day. What it feels like the day they become resigned to this, and just hold out their hand without looking at you, like a broken little prisoner of this condition.

What it felt like last night when I woke my daughter up, trying to sneak one needle out and another into her little body, because even a pump needs to be changed every 2-3 days, and that is a needle too. When she told us she can’t do it anymore, and begged us not to “do the sharp thing” again. When I told her that we had no choice, and that I had to stick her yet again, and that it wasn’t stopping. Not soon. Maybe not ever. Probably for the rest of her life, because a cure has been promised for 30 plus years and yet here we are, making scar tissue on my 4-year-old’s backside at an alarming rate. What it felt like to lie with her in her bed and cry, while she told me, “Mommy, it’s ok, I love you.”

I don’t want you to know what it feels like when once in a while I take all of the life-saving equipment off of my little girl, and I hold her little body tight, and cry because I get to touch her without worrying about ripping things out of her skin by accident, for an hour. But just an hour, because I have to put it back in. I have to.

I don’t want you to know how agonizing it is to bathe her and take in all the holes that I have put in her skin in our efforts to keep her safe, and to know eventually I will have to start putting holes in new areas so the old ones can heal better.

I don’t want you to know.

But I do.

I want you to know because I didn’t know how serious it was til it hit me. And I realized that you didn’t understand, and I want you to. Not for pity. Never for pity. For understanding. For support. To get the word out, to make clear how serious this is.

I want you to know so your kids will be kind to ours, and as teenagers they will choose to treat their condition instead of risking their own lives to avoid the ridicule of their peers.

I want you to know because even health professionals don’t know, and the risks are constant. 

So when we are voting for leaders, we think about who might help divert funds and research to save these little lives, and the ones of people who have lived with diabetes for far too long.

I want you to know so that we all know the signs, and no more lives are lost to confusion and misinformation, so the ridiculously inexpensive tests are done as a matter of course.

So when people are deciding to give to a charity, they might just choose our little kids once in a while and not think of this as a joke.

I want you to know through me so attention is paid to this disease, so we have a chance for a cure. So no one else has to know firsthand.
Thank you Michell. ❤

Welcome to Diabetes 101

Most people do not understand that not all diabetes is the same. Most people make assumptionsabout diabetes – especially Type Onediabetes – based on their limited knowledge of Type 2 diabetes.

First of all, there have always been 3 types of diabetes. In recent years, a 4th type– known as Latent Autoimmune Diabetes in Adults (LADA), sometimes referred to as Type 1.5 – has been established to describe a slower-onset of type 1 diabetes in adults (as in slower than the crash-and-burn sudden need for insulin).

Meet the Pancreas

This phallic-looking organ (sorry – had to get that out of the way first), located behind the stomach, essentially does two jobs. It produces insulin (a hormone that converts the food we eat into energy for the body to use and also regulates blood glucose levels, which would otherwise be toxic) and enzymeswhich aid in digestion. Got that?
Okay – the 3 types of diabetes:

Type 1 – Pancreas produces no insulin. People with Type 1 diabetes have to take insulin by shots (or via an insulin pump) in order to survive.

Type 2 – Pancreas produces insulin, but either the body cannot efficiently use it or there is not enough insulin being produced. Type 2s typically take oral medications and focus on diet and exercise.

Gestational –Occurs in some pregnancies and goes away after the birth of the child.

You still following me?

The Burning Question – What Causes Diabetes?

Type 2. Well, as I said above, the pancreas just isn’t using the insulin efficiently (or there’s just not enough to go around). Insulin’s job is to keep blood glucose (aka blood sugar) in a healthy range – but if it doesn’t do its job, blood sugars go high and diabetes results.

Geneticsappears to play a role – you may notice Type 2 diabetes runs in families. Genetics also plays a role in …

Obesity has long been fingered as a culprit of Type 2, but let’s clarify. For some reason, having too much body fat can cause insulin resistance. There appears to be a link between having diabetes and where fat is stored on the body – particularly too much fat above the hips. (However, there are plenty of type 2s who are not “fat.”)

Age.  Half of all new diagnoses occur in people over age 55. Many folks tend to gain weight as they age, which is probably why more older folks seem to have type 2 diabetes. Incidentally, there has been a rise in type 2 diagnoses in children – attributed to many of these factors I have mentioned.

Inactive, Sedentary Lifestyle, in many cases combined with a high-calorie diet, can also lead to type 2. Again, this factor is a contributor to heavier weight and obesity. It is important to clarify that diabetes is not caused by eating too much sugar.

But not all type 2 diabetics are fat, are they? That’s where genetics comes in. My maternal grandmother has type 2, and my mom is now taking medication for type 2. Grandmom is sure her mother had it as well, though she was never diagnosed. So where does this leave me? Thinking really hard about what I can do to prevent it.

And now, the reason for what I do…

Type One. Let’s break it down. The pancreas has little friends called beta cells. Let’s just say the pancreas is the boss, and the beta cells are the employees. They’re all doing a great job, until suddenly one day – a terrorist comes into their building and starts shooting all the employees. It may take some time to kill them all, or it may be over really quick. Either way, there’s no one left to do the job. The boss could hire new employees, but the terrorist will keep coming back. This is the body’s autoimmune response.

No one can definitively explain why this happens. In some cases, genetics is a factor. Some believe environmental factors are at work. I’m no expert, but I am firmly attached to the latter. My daughter’s type one diabetes came out of nowhere, with no genetics involved.

Often, Type One diabetes is precipitated by a virus. If you haven’t really been paying attention yet – this is the part where you want to wake up. Many, many children (and surely adults too) have presented with symptoms of illnessthat are often misdiagnosed as flu or virus and these children are sent home. For at least 3 documented children this year, this missed diagnosis cost them their lives. I’m going to be talking a lot more about this in my next post. It’s one of the main reasons many of us are stepping up and getting very loud about Type One diabetes, especially this month.

Finally, it is extremely important to understand that neither I – nor my then-2-year-old daughter – did anything to cause her diabetes. There is absolutely nothing I could have done to stop it. And – repeat after me – eating too much sugar does not cause Type One Diabetes.
If there’s one thing to remember today, and one thing you can tell your friends and family about Type One Diabetes, it’s that eating too much sugar does not cause Diabetes.  Well, that – and that Type One and Type 2 are not the same. And I’ll talk about that too.

Oh – and – there is no cure.