Primum Non Nocere

25943840033_ee6b1ba12a_o.gif” title=When we embark into the realm of social media we leave ourselves vulnerable to the harbingers of doom as well as to other more sinister types of people.

Harbingers are not to be confused with trolls – folks who intentionally set out to cause disruption and chaos.

Harbingers are not charlatans – folks who claim to have special knowledge who pander to people’s fears and hopes with snake oil.

Harbingers are not the catfish – folks who falsely represent a person or group to gain trust but have malicious intent.

The harbingers of doom are the folks who criticize others regarding managing diabetes, chastise others for mental health concerns, are always negative, focus on all that could go wrong, and never what has gone right.

Today is day one of Diabetes Blog Week. A week of focused blogging started seven years ago by Karen of Bitter-Sweet.

Today’s blog week prompt is Message Monday.

Some might think that my favorite diabetes message is the motto I stole from Nike (maybe? I never could find who coined the phrase) “It Never Gets Easier, You Get Better”. Recently I read somewhere –  I can’t recall where, a new version of the phrase, “It Never Gets Easier, You Get Stronger” < that is way better than the version I originally stole.

But today my favorite message regarding diabetes advocacy online and in real life is:

First, Do No Harm.

When we start writing, sharing, posting, commenting, and communicating with others about diabetes it is imperative we understand how our words can affect the lives of others.

My kids use specific insulin pumps. I do not criticize those who choose different pumps, especially right now when #choicematters and #mypumpmychoice.

My kids have A1Cs slightly above recommended guidelines but they are decent (their A1Cs – not my kids – although my kids are pretty awesome too when I don’t want to throttle them) and they work hard to maintain them. I don’t brag about them and I don’t berate others for having a less than stellar A1C. Diabetes is really ducking hard.

I don’t watch my kids blood sugars live via Dexcom or NightScout. They occasionally wear the Dexcom G5 when they will be away for long periods or I will be away. Mostly for my piece of mind. I know there are parents who watch CGM graphs for their child throughout the day and night. Those parents are doing what works for them and their child. I don’t judge them and hopefully they don’t judge me.

My kids eat a ton of crap. I don’t put many restrictions on edibles. If their blood sugars are below 180 and they want a sweet, chips, or other crap food then have at it. Honestly trying to micromanage my kids crap intake was futile. They are teens. They have opportunities to buy crap everyday without my knowledge. I wish they didn’t, but they do and punishing them does not instill in them a desire to eat healthier. I do not critique the diets of other children or adults with diabetes. Not my body, not my business.

For the most part I see good in the community. I see support and empathy and sharing of knowledge. Occasionally I see things that are hurtful or harmful. Sadly much of the hurtful and harmful remarks or posts come from the newly diagnosed or parents of the newly diagnosed. The ones who are still struggling with identifying with diabetes as a whole instead of putting a box around certain types of diabetes and in the process alienating those with a different type than themselves or those they love. I get it. I was there. It was a long time ago. A time before I was part of the diabetes community, before I fell in love with the hearts and souls of people with all types of diabetes in all walks of life. There is a learning curve – not just in managing diabetes but in understanding the community and our place within.

My kids with type 1 diabetes have made me stronger. My friends with all types of diabetes, who use all different tools, different tricks, and are honest about the emotional, psychological, and physical toll diabetes take on the body and soul have made me smarter.

So today my message is First, Do No Harm. 

After that – make noise, raise awareness, be badass, check-bolus-eat, act justly, live honorably, walk humbly, and always love fiercely.

A Picture Says a 1000 words

A Picture Says a 1000 words

Sweetstuff’s painted rock at Diabetes Camp

Day 6 Diabetes Blog Week

Back for the third year, let’s show everyone what life with diabetes looks like! With a nod to the Diabetes 365 Project, let’s grab our cameras again and share some more d-related pictures. Post as many or as few as you’d like. Fee free to blog your thoughts on or explanations of your pictures, or leave out the written words and let the pictures speak for themselves.

1 of many baskets of D supplies
The sharps container we have had for 5 years but never filled – oops
Hall closet – pump supplies
No butter in our butter compartment
Life juice
Doesn’t everyone own 5 sets of measuring cups?
One scoop equals 5 grams – isn’t this how everyone eats M&Ms? 
Night time check – Rufus is always near
random awesome pic of my boy during a swim meet – next Olympic swim star
playing with food at D camp
checking sugars at D camp
Sweetstuff’s first solo shot – at D camp
Life is all about perspective –
Sometimes we are looking up and feeling invincible, other times we are falling fast hoping our rope won’t brake.
We don’t let Diabetes get in our way.

Check out more photo stories by other awesome dbloggers HERE

One Size Does NOT Fit All

Diabetes Isn’t a Pants Size

Diabetes Blog Week Day 5

Today’s Prompt:
Today let’s borrow a topic from a #dsma chat held last September. The tweet asked “What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?” Let’s do a little advocating and post what we wish people knew about diabetes. Have more than one thing you wish people knew? Go ahead and tell us everything. (See that I have permission to tell more than one thing – gloves are off – grab a coffee or two and hang on)

Oh the things people think? The misconceptions seem to multiple like bunnies in a barn. I am not judging the general population – I was one of them back before Feb 7, 2007. My first thoughts when the doctor told me Sugarboy had diabetes was that he couldn’t eat the chocolates I had already purchased him for Valentines Day. I got schooled and now it’s my turn (ok to be fair I’ve been schooling folks since Feb 8th of 2007 – If don’t want to hear it then edjumatcate yourself or shut up).

The easiest way for me to tackle this profound prompt is via bullets – (not the ones I would like to use on ignorant people who refuse to understand).

  • Diabetes is not a pants size – my kids will not grow out it. Having Type 1 diabetes requires the pwd to check their blood sugar as many as 14 times a day – before all meals, snacks, physical activity (including sex), sleeping, and all the little times in between that the pwd feels symptomatic (high of low blood sugars). having diabetes requires the pwd to inject synthetic insulin into their body via a syringe or and insulin pump (the pump is connected to their body 24 hours a day). Diabetes will be with my kids 24 hours a day 7 days a week until a cure is developed. (Sub bullets are required to explain further)
    • Insulin is NOT a cure – it is a means to sustain life
    • While an Artificial Pancreas will be wonderful – it too is not a cure – it uses artificial insulin to regulate blood sugars and will take some of the day to day diabetes management out of our hands and hopefully provide better control but it is not a working human pancreas.
    • Glucose Responsive Smart Insulin I love love love this idea – Still not a Cure because it doesn’t jump start a person with diabetes pancreas again but it is the closest thing to it I’ve read about so far. The idea is a pwd (person with diabetes) would do one injection each day and the insulin would react to the bodies blood sugars like a working pancreas would. It is likely decades away from full development but I see research dollars being well spent here.

  • It’s NOT their fault or mine. People with Type 1 Diabetes did nothing wrong to develop diabetes. I did not spoon feed my kids sugar as infants and toddlers. I did not put regular coke in their sippy cups. The did not survive on fast food or junk prior to diagnosis. (At this point I want to also point out that most people with Type 2 diabetes or other types of diabetes are also not lazy junk food hoarding sugar mongers that caused the diabetes) Diabetes is an autoimmune disease that is a combination of genetics and environmental influences. (Yes many people can avoid developing Type 2 diabetes but even with a great diet and regular exercise Type 2 can happen)
  • Give them the damn cupcake! People with type 1 diabetes can eat all the same foods people with diabetes can eat – they ‘just‘ have to take insulin for it. Before a person opens their mouth to ask me if my kids ‘should’ be eating – insert high sugar content food item here – they should ask themselves if they should be eating it. The answer is likely – no – but for the exact same reasons – junky foods are junk for our bodies and should only be eaten in moderation by all humans (try to take away my Reese’s peanut butter cups and you will loose a hand).

    • ‘Just’ Don’t let that word fool you. Taking insulin is not something one does lightly or with little thought. Calculating insulin doses requires a great deal of understanding of how insulin works, how much is needed to cover a specific amount of carbohydrates, how much exercise was done or will be done during the day, what kind of carbohydrates are being consumed, what time of the month it is (for girls), how the stars are aligned, what Chinese year it is, if you heard a crow cry that morning – etc.
    • Oh yea – also every time I dose my kids with insulin I am putting their lives at risk. Too much insulin and I could put my kids in immanent danger of a severe low blood sugar that could result in death. Too little insulin over extended periods of time can cause complications such as blindness, amputations, heart decease, kidney disease and others.
I pity the fool who pities my kids
    • Yes the finger poking hurts NO we don’t need your pity. It is not necessary for a person without diabetes to make the “eeehhhooooh” sound when they see my kids poke their fingers to check their blood sugars. It doesn’t help them feel better about poking their fingers. It is ridiculous that even adults make that same sound (the pity sound – Sweetstuff calls it) when they see the kids poke their fingers. Thank you ignorant adults for making it obvious to my kids how much diabetes sucks (btw they are well aware of how diabetes sucks)
      • When idiots (adults) who actually ask my kids “does that hurt?” a large had should appear above their head and deliver a swift and hard slap to the top of the adults brain to try to jump start it. I don’t feel the same about kids when they ask – it is natural for them to not really know if it hurts and being curious is better than being a bully.
    • Also let me just say how I am proud of my kids for being brave and poking their fingers repeatedly (although it would be great if they spread the poking love to all ten digits – the pinky is feeling especially left out)

  • You WOULD do it if you had to. If I had a dollar for every time someone said, “I could never do that” I would have a lot of dollars (couldn’t think of anything witty or fun to say). The thing is I didn’t know squat about diabetes before Sugarboy was diagnosed. I learned and I continue to learn. We do what we have to do for our kids to keep them alive and healthy – we would do the same for ourselves. People should not underestimate their own abilities to survive or to keep the ones they love alive. It isn’t easy – it will never get easier – we just get better.

See more posts about what others need to know about diabetes HERE

Fantasy Diabetes Device

Fantasy Diabetes Device

Diabetes Blog Week Day 4
Today’s prompt – Today let’s tackle an idea inspired by Bennet of Your Diabetes May Vary. Tell us what your Fantasy Diabetes Device would be. The sky is the limit – what would you love to see?

My fantasy device would be something out of a sci-fi movie. The ones in which 3D holographs are used and can be interacted with. It would use the fruit phone of course (thank you Steve for all your innovative products). The device would:

  • act as a CGM monitoring blood sugars with intense accuracy
  • scan food to determine carbohydrate content as well as calories, sugar, fat, and fiber
  • monitor our activity level
  • monitor our hormone levels
  • calculate insulin requirements (based on activity level, food intake, and hormone levels)
  • make suggestions for tweaking basal programs on pumps if in use for maximum control
  • Be interactive so we could make notes and take action with our finger tips (I guess it doesn’t have to be holographic since the iPhone is already touch screen – but it would be so damn cool if it was)

Kids watched an old episode of Gem and the Holograms yesterday – guess it is still on my brain – GEM! I so loved that show.

Good can always be Better

Always Room for Improvement

Today’s Diabetes Blog Week prompt: We probably all have one thing we could try to do better. Why not make today the day we start working on it. No judgments, no scolding, just sharing one small thing we can improve so the DOC can cheer us on!

Like so many of the wonderfully terrific blogs I have read today I too have a loooooonnnnnnggggg list of things I could improve on. Trying to find just one would be too difficult so I cheated. I have TWO kids with Diabetes so that means I get TWO things that I need to improve on. ; P

First my dear Sweetstuff – I meant to ask her what she needed to improve on but she is an emotional mess lately and I was afraid to ask the simple question “Hey baby – what would you say is the one thing that you could improve on regarding your diabetes?”
I was afraid because knowing her like I know myself in the state that she is currently in she would get defensive, take it as an attack, argue that she is trying her best, etc etc – she would likely add something about the two pimples she has, the fact that her bangs do this odd flippy thing and her bff is being a total butt. (I love my daughter I love my daughter – it’s only the hormones it’s only the hormones)

So I avoided asking her and instead thought of all the things she does great – checks bs often, doses insulin in a timely manner, recognizes symptoms of lows or highs, advocates, educates, changes pump sites, changes her lancet every morning, carries fast acting carbs, and tests before physical activities.
With all this stuff she does so right I was having a difficult time thinking of the one thing she could do better. Then I realized the one thing she could do better is something she currently doesn’t do at all – log BS and Doses. She did it while she was on her pump hiatus but then stopped as soon as she put back on Alice (her pump –  because diabetes is a rabbit hole and because the magic liquid inside it makes her get smaller (lower) after eating cookies which make her get bigger (higher) – Have I said how much I love my daughter and her inner nerd).

Thus the one thing I feel Sweetstuff could do better is begin logging again – yes it is a total pain in the arse but hand written logs do more for her and I than downloading her pump each week (haven’t downloaded in over a month). Logs keep us vigilant. They help keep us accountable.
I might suggest this advice to her tomorrow if her pimples have cleared up and she is having a good hair day.


Now for Sugarboy –

While my dear boy can be very independent I am still very much involved with his care. I include carb notes with his lunch, I fill the insulin cartridges, I do most the infusion set placements, I count his carbs at meals that do not come pre-packaged. I sometimes even check his blood sugars when he is awake. He is more than capable – but how can I resist this cute face when he asks me to check for him. Overall he does very well with most diabetes care that I give him and I continuously give him additional control as he requests it.
The thing that Sugarboy could improve on (and me too) is reducing the amount of processed sugar that he consumes (not being used to treat a low bs).
He is an 8 year old by with a sweet tooth. He is always asking for ice cream, M&Ms, Laffy Taffy and lollipops. I’m a sucker too and if his blood sugars are decent I allow him to have the treats. I guess one could say I practice what I preach. I am always educating the general public that a person with Type 1 diabetes can eat everything a person without diabetes can eat. The part I forget when I am at home confronted by a small dimpled child with eyes as bright as the sea is that just because they CAN eat it doesn’t mean they SHOULD eat it. It is a fact that the less carbs (especially the fast acting carbs found in processed sugars) a person with diabetes consumes the better – not to say a person with diabetes should go carb free – I think that is unrealistic for small kiddos especially. I do think reducing carb intake can truly improve blood glucose control and make managing diabetes a tad bit easier  – well until PMS, or Job Change, or it starts raining, or there is traffic, or or or or or…..

So to recap – encourage hormonal pre-teen to start logging again (carefully) and discourage Sugarboy from eating too many processed sugars.
This will be a piece of cake (if the cake has to be weighed, ingredients determined, multiple math problems solved, and then more calculations to be completed to determine the correct dose of insulin is required at bedtime after a day of swimming, hiking, and soccer) – like I said easy peasy.

One Great Thing

One Great Thing

Today’s DBlog Week prompt asks us to give ourselves some much deserved credit by identifying just one diabetes thing we do spectacularly.

I do well with BS checks (including the ones in the wee hours of the night/morning).
I do well with carb counting (mostly).
I do well with noticing symptoms before my kids feel them enough to claim them.
I do well with identifying trends and adjusting basals and ratios when needed.
I do well at helping my kids build independence.

What I do best is educating others.
I don’t take offense when someone suggests that there is a cure if only I would give my kids more cinnamon. I don’t get annoyed when the 1001 person asks me if my kids will grow out of it. I don’t become defensive when someone suggests I should not have spoon fed my kids sugar as infants. I try not to get angry when someone suggests that “at least it’s only diabetes.” I don’t become too frustrated when someone suggests that my kids simply stop eating all carbohydrates and should defiantly avoid processed sugars.

Instead I educate.

No – cinnamon, tree bark, vitamin D, and magic fairy farts will not cure my kids. A cure will come from hard working individuals and organizations raising money and using the funds to do research.

No – my kids will not grow out of diabetes. Their pancreata no longer have the ability to produce insulin and the cells do not regenerate so until there is a cure my kids will continue to have diabetes.

No – My kids did not develop diabetes because I fed them too much sugar earlier in their lives. Diabetes is an autoimmune disease that just happens. Scientists are not entirely sure why it happens but there are indications that it is part genetic and part environmental. Scientists believe a person has to be predisposed to developing diabetes but also that a catalyst is required to set in motion a chain of events that will result in the destruction of the insulin producing islet cells in the pancreas.

Yes – I know there are worse things in this world than developing diabetes but unless you or your child is suffering from a ‘worse’ less manageable or even terminal illness you have not earned the right to suggest that it is ‘only’ diabetes. When my kids were diagnosed they were both assigned hospital rooms in the same ward as kids with cancer. I shared coffee with some of the parents of the children with cancer. Some of the parents knew they might not take their child home. I knew I would – yes I know there are worse things than diabetes. That doesn’t mean diabetes is easy and certainly doesn’t mean that I don’t fight for my children’s lives everyday.

Yes – if my kids stopped eating all carbs and limited their entire diet they could live insulin free – for about a year – maybe two. That was the life expectancy of a person diagnosed with Type 1 diabetes before 1922 (the year in which the first human received insulin).

I admit I used to get a little peeved when an uneducated person asked the above questions or made suggestions that would result in the death of my children. The thing is, it isn’t the general populations fault that they are uneducated. I didn’t know diddly about diabetes when Sugarboy was diagnosed. I likely thought the same things before I got a crash course in Type 1 diabetes at the hospital.

Anger and frustration will not encourage the general population to become educated and support research that will cure diabetes. A kind explanation will.

 

You’ve Got a Friend in Blogs

You’ve Got A Friend In Blogs

I am participating (well I’m going to attempt to participate) in the 3rd annual Diabetes Blog Week

Today’s prompt was to find a friend – in other words find a blog that I haven’t read before or have maybe read occasionally but want to read more frequently.

There are countless dblogs (well maybe not countless like Real numbers which are uncountable – learned that recently {sort of I still had to check if the uncountable numbers were real or natural} from a friend that makes my brain hurt with all her math jargon – what can I say I’m a sucker for nerd awesomeness).
Sorry – digressed –
My point is though that I could likely spend every hour of everyday for an entire month and not find, let alone read all the dblogs available on the net. Luckily a wonderful list has been compiled for me (yup it was made just for me – well also the other hundred or so people participating in this years Annual Diabetes Blog week THE list.
While pursuing the list I saw many of my favorite blogs as well as some that I forgot I liked because I am not an organized person and I don’t remember to bookmark them or better yet add a link to the blog(s) on my blog so I can find it easily and others can too. (I also have a hard time with run on sentences and too many parenthesis – admitting it is the first step to recovery) Thus – in addition to attempting to write each day of dblog week I will also be updating my blogroll on my blog. If you find my silly little corner here on the net and you have an awesome blog that I haven’t included in my blogroll please shoot me an email or send me a tweet so I can add you. On twitter I am momof2t1s – keeping it simple.

On to my post:
I just found Jen with BHS – thank you List. I’ve read Sarah’s blog before and enjoyed it each time but always forgot to bookmark. Alexis is a favorite of mine. Amber is a new one for me but I think we are going to be great friends – the other Amber I know seems to like me a bit.

Jen From Blue Heel Society I love this particular post – Don’t Quit – wish I had a cool teacher like Jen had.

Sarah/@SmartDpants I love this post by Sarah because she clearly feels my pain in regards to #5 – how difficult could it be to allow the meter to have the same information as the pump.

Alexis Nicole Chronicles of D-Boy and Ribbon I love this post because Alexis understand all that it means to be a mom to cwd – of course she is stressed and tired and angry but with all that she is able to keep humor center stage.

Amber Cliff Notes I clicked on this blog from THE List because I like the name Amber (a lot) and I knew the moment I started reading I was going to like both Amber and her blog. The pics are great and I can’t wait to check out the FB page. Turns out I was already following dear Amber on Twitter but I don’t recall ever visiting her blog – that doesn’t mean I hadn’t – it means I was either drinking heavily at the time or sleep deprived or distracted by unicorns dancing in my office – since I rarely drink I’d go with sleep deprivation which may or may not have included dancing unicorns.

I could spend hours clicking on blogs and reading my night away but I have pillows and bedding to stuff into vacuum bags so I can watch them squish down – I get a real kick out of suffocating my pillows – irony? (I still don’t know how to properly use that word – darn you Alanis!)