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.

I advocate Therefore I Am

Warning – this post is 1270+ words. normally I would toss in some random cat pics but honestly I don’t want to take away from the message. I thought about changing the font randomly but that just seemed silly. Its wordy but in my very humble opinion worth it.

Who is an advocate?

: a person who argues for or supports a cause or policy

: a person who works for a cause or group

: a person who argues for the cause of another person

By definition I am an advocate.

I work to promote education about diabetes. Not just type 1 diabetes which is what all three of my kids have but also Type 2 diabetes and the grey area in between. The media does a fantastic job of confusing the public about diabetes. The magazine covers and online advertisements that suggest people can reverse their diabetes with okra infused water are all too common and mislead the public. Media also does a fantastic job of creating and emphasizing incorrect stereotypes – “people with diabetes are overweight and diabetes is caused by being overweight.”

 

The advertisements are nearly always wrong and damage our efforts to educate others about diabetes. This is what the world should be learning: It can’t be reversed. There is no cure. No one chose to get diabetes. Insulin is not a last resort. All kinds of diabetes are bad.  People with diabetes can do everything anyone else can do. There is no one body type or size that can define what diabetes looks like.

 

I argue for a cause on behalf of my kids and my friends. I actually don’t argue often. I talk. I share stories. I listen. Arguing doesn’t always mean raising our voices above our inside voices – it simply can be using our voices. I don’t argue with the store clerk that questions my purchases of both ice-cream and glucose tabs. “You have diabetes? Should you be getting ice-cream?” <<< Yes that happened. No I didn’t shin-kick her. I simply said “my kids all have type 1 diabetes. They can eat ice-cream the same as anyone else, they inject insulin to make up for their lack of insulin producing cells. As far as the glucose tabs – they are easier to carry in their pockets to treat low blood sugars than ice-cream is.” The clerk just nodded and continued to ring up my other items which included (among other non-carb foods), rice, Cheerios, whole wheat bread, a bag of russets, apples, and bananas. Note she did not comment on all the other carbohydrates I was purchasing – just the ice-cream. Why? because of the misconception that diabetes is caused by and worsened by SUGAR. So much misinformation. I don’t get angry. I was one of those people prior to Feb 7th of 2007. Still pretty ballsie of her to question my ice-cream purchase. Even more so since she must have SOME idea about diabetes since she knew what glucose tabs are.

 

 

I work for a cause. Our family walks each year with the JDRF to raise funds for research. I use the word work because it is part of the definition but it never feels like work. Yes, long before the walk I am begging friends and family for donations – that is work and asking for money always makes me uncomfortable – still I ask and people give. I also create videos to share. Pictures of my kids smiling, sleeping, grouchy, flushed, pale, happy, sad, excited faces – all the faces of diabetes. Thats not really work because it means I get to sift through my thousands of photos and remember the moments behind them. Work has such a negative connotation – when many think of work they think of Mondays that come too soon and Fridays that take forever to arrive. Raising awareness and funds for research is work but it isn’t the 9-5 mind numbing cubical kind of work.

 

I also act as a mentor with the JDRF. I call and email new families. Families that just weeks earlier dropped kids at play dates, worried only about an incomplete homework assignment, argued about untidy rooms and going to bed. My job is to listen to their concerns, offer support, provide helpful numbers and share my experiences while I ensure them that diabetes will blend into the play dates, the untidy rooms, the bedtime delay tactics. My job is to assure them that it won’t actually get easier but they (and their child) will get better. Better at not letting diabetes rob them of their moments. (BTW – I would like it noted that I do believe I used ‘ensure’ and ‘assure’ properly – I think)

 

They’re are other JDRF things I do and my kids do. They’re are Promise To Remember meetings we have attended encouraging our government representatives to vote to support diabetes research (or thank them for their support). They’re are medical studies the kids participate in to help advance diabetes tools and technology. They’re are fund-raising campaigns I donate to and/or share (like Spare A Rose – click that link and donate please) that help others get the medical care and tools they need to live. I never see any of it as ‘work’ – its just what needs to be done.

 

I write. I share stories. I have carved out a tiny corner of the blogosphere where I share my life and parts of my kids lives. It isn’t a big corner but it’s mine and I like it. I like it when others visit and share a thought, offer a hug, or tell me that something in my corner helped them in some small way. There are bigger corners and maybe I will move up to a bigger corner one day but Im ok here too. It’s a place I can speak freely and share safely. Sometimes I do dig out my soapbox and try to be louder and sometimes more people hear. It’s all part of advocacy – sharing, educating, supporting, engaging, listening, learning, loving, hoping.

 

So if you send an occasional tweet, post a thought about diabetes on Facebook or Instagram or Pinterest or Tumbler or Google – or…. – then you, my friend, are advocating (well not if you’re the guy that shared the okra infused water cure – if you are that guy, then you are an asshat).

 

But you – the mom who calls a non-D friend about a playdate with your child and explains that your child is just like her child but will need to check her blood sugar – then you are an advocate.

 

And you – the dad who teaches your child’s teachers about blood sugars, high, lows and glucagon – you are an advocate.

And you – the grandma who takes the time to learn how to check a grandchild’s blood sugar and what carbohydrates are so your own child can get away with her spouse for a much deserved weekend away – you are an advocate.

And you – the person sipping warmed over coffee while reading this post and looking for the “share” button – you are an advocate. (too much? too beggy? sorry – Ill stay in my corner)

The point is – advocacy doesn’t always mean you wrote a best selling book, have a blog or website that reaches thousands, or accept speaking engagements at large conventions – it means you share tidbits/snippets of your life and/or the lives of your CWD with those not in the diabetes world. (don’t get me wrong those folks with the really huge corners that do all the huge things – I admire and thank you for your footsteps)

This is my February DSMA Blog Carnival Post. Write yours and share it at DSMA

Please check out Spare A Rose, Save A Child!

Now watch my video. Trust me it wasn’t work. The dishes I avoided – that is work.

This was fun.  – <<<< video link

(I have no idea how to make a video just show up. Click the link – click it – you know you want to.)

“This post is my February entry in the DSMA Blog Carnival.  If you’d like to participate too, you can get all of the information at http://diabetescaf.org/2014/02/february-dsma-blog-carnival-3/

oh F***

I’m torn. Really seriously torn. I want to give these kids kudos. I want to congratulate them and wish them luck at the Grammies. I want to thank them for raising awareness about the dangers of sugars and how eating unhealthy can/will lead to obesity and other health issues.

The thing is – I can’t. I can’t congratulate them, wish them luck or thank them because of one of the last text slides after their video.

diabetesphoto

No indication as to what form of Diabetes the creators are targeting.

Hear is the info shared beneath the video on YouTube – (which you can only see if you expand the text by clicking “Show More”) HERE is the link to the video.

“In PUSHIN’ WEIGHT, directed by Jamie DeWolf, Simone Bridges makes the metaphorical connection between the Food Industry, High Sugar foods and the pushing of drugs on our streets. Youth Speaks and UCSF Center for Vulnerable Populations are leading the campaign against Type 2 Diabetes with our new project, The Bigger Picture. Raise your voice TODAY!”

The “Type 2 Diabetes” is not in bold in the text under the video – I altered the quote to raise a point. This is the only place the phrase “Type 2 Diabetes” is used.

I won’t even go into how wrong I think it is overall to be suggesting that Type 2 Diabetes is caused simply by unhealthy eating. There are other reasons Type 2 Diabetes happens too.

But I am a parent of 3 children with Type 1 Diabetes. My kids did not get diabetes because I pumped them full of sugar, corn syrup, bacon and fat. I fight often to educate people about how Type 1 Diabetes happens and first and foremost how it has nothing to do with what I fed my kids or what I ate while pregnant.

I am proud of these kids. I’m glad they created a PSA video. I just wish they didn’t include “Diabetes” in their slides or if they really felt it necessary – they could have listed Type 2 Diabetes as one of many health problems that can be caused by poor food choices.

How did I come to find this *gem of a video. An email I received from “The Daily Good”. I get daily emails from “Good” and most are worth the read/watch. I was excited at first when I saw the subject line of today’s email.

“Watch This Diabetes PSA – Could Probably Win a Rap Grammy” 

Here is the text from the email I received which included a link to the video I shared above.

“Highlighting how today’s sugar consumption is similar to drug addiction, Youth Speaks and UCSF Center for Vulnerable Populations have teamed up with high schoolers to raise important questions about healthy food access with provocative PSAs about diabetes. Their campaign, The Bigger Picture, gives youth opportunities to not only show-off their creative skills, but also win educational scholarships.”

Click HERE to learn more about The Daily Good. Most the stuff I receive is *Good, today’s was an exception not a norm.

I do hope these kids receive educational scholarships. Their video is quite good. But still – it didn’t need to focus on diabetes – any kind. And honestly – for shame UCSF for not recognizing how this video could have a negative impact on how hard those of us in the Type 1 community (and all of the DOC) work to educate others.

I find it ironic that this is my first post of 2014 and follows behind my daughters guest post about the boy in her class that suggested he would get diabetes from eating too much sugar.

Happy friggen New Year.

 

Sharing Is Fun, It’s What We Like To Do

Today is Day 4 of the Health Activists Writers Month Challenge

Today’s challenge: Create a “care page” – a list of your best resources that someone who is newly diagnosed could go to when starting to advocate for themselves or a loved one. 

Have I mentioned how incredibly disorganized I am? Being so disorganized is difficult and bothersome. My disorganization doesn’t just disrupt me it annoys the heck outta my husband too. Just last night I asked him to fix my email because I was trying to email myself pictures from a file to include in a collage for Day 3. He became distracted and highly aggravated by my disorganization – in his defense I had no less than 6 word documents open, my desktop is filled with other documents and pictures, and I have over 350 unread email messages. It drives his OCD brain insane. (He is not OCD when it comes to leaving socks, shoes, candy wrappers or coffee cups all over the house.)

I have known for sometime that if I would add all my favorite blogs and websites to a special ‘feed’ or ‘reader’ I wouldn’t spend so much time trying to find the pages again. I asked for help early last night regarding organizing my favorite blogs and web pages and a dear friend from the DOC (Diabetes Online Community) agreed to help but she can’t until Friday. Thus – I’m screwed for today’s prompt. Speaking of the DOC – you can find so much support on twitter. Join Twitter – search the hashtags #DOC, #DSMA. You will never be alone with an entire community of people following you – free glitter, bacon and cupcakes for all newbies (all virtual btw – I’m not actually going to send you a bacon cupcake topped with glitter).

One of the first places I would suggest both D-rents (that’s parents of kids with diabetes – I totally only learned what Drents meant on Monday and I’ve been one for over 6 years) and PWD (People with diabetes) go after diagnosis is the JDRF website. Yes they are a fundraising organization but they do great things with those funds in addition to funding promising research that will one day end diabetes. THIS link will take newbies to specific pages for the newly diagnosed (both for drents and pwd) within the JDRF website. As far as the advocacy part of JDRF – you can create or join a walk team to raise money while raising awareness. I should mention that the JDRF focuses its awareness toward Type 1 diabetes but when a cure is created (let’s be honest it isn’t like we are going to turn over a rock and find it) it will benefit all people with diabetes.

So much text – here is a cool cat picture to break it up.

My cat is Batman

My cat is Batman

Another great recourse (also a fundraising organization doing wonderful things to advance diabetes awareness and end the decease) is the American Diabetes Association. THIS link is also specifically for the new diagnosed. It has tips and tools for both Type 1 and Type 2 diabetes management, how to get the best from your healthcare team, and you can register to join the TourdeCure (which I would be excited about if I was a cyclist) – it is exciting that so many PWD do ride and raise a great deal of awareness and money for research.

Advocating for your school aged child is likely one of the most frustrating and daunting tasks for parents of newly diagnosed children or to those that move from one location to another while trying to maintain some sort of consistency. One of the best resources I have used while advocating for my children at school can be found HERE. It has oodles and oodles of information. I wouldn’t try to wade through it all at once. If your child isn’t in school yet I would suggest taking time to read and familiarize yourself with laws (both federal and state), read sample 504 plans (legal documents that protect your child at school), and print out the resources for teachers and classmates. The Children With Diabetes Organization also has a great page that shares webpages to help advocate for yourself or your children. Find that HERE. Honestly just go to the CWD website and poke around for information regarding all things diabetes – be sure to check out the Friends For Life conference page and if you can go – GO. (It isn’t just for families with cwd they have adults with diabetes tracks at the conference too!)

I have a number of amazing websites and blogs listed here on my blog too – look to your right. I have been meaning to organize them better with descriptions about the authors and such but haven’t. (Have I mentioned Im disorganized?) I have also been meaning to figure out a way to keep YOU on my blog while also sending you to other great blogs but I haven’t done that either – the links will take you away from my blog so before you go to the others maybe bookmark mine or sign up to get my drivel awe inspiring babble prose sent to your inbox – I mean shit if you read all the way to this point clearly you find me riveting and here is another a cute cat picture.

gracie2photo

 

Challenge Accepted

August 23 • Day 3: Challenge Accepted!  (Still 3 days behind! – lol – I was 3 days behind when I started this post but now it’s like 7 days behind – sorry things came up)

Parenting isn’t all sunshine and ice cream – it’s hard. Write a post that delves into 3 challenges that you face as a parent.

Parenting is challenging even without caring for one or more children with special needs or a chronic disease. I’m not about to throw myself a pity party because truth be told I have it much easier than many – not that I wouldn’t like to show diabetes the door and watch it grab its hind quarters as the door hits it in its ass on its way out.

In addition to the “normal” challenges of parenting such as: teaching responsibility, honesty, kindness, compassion, and resourcefulness (btw – IMHO – all of the above are actually taught via example rather than with words); as well as providing healthy meals, encouraging exercise,  taking the rugrats to doctors and dentists, driving them to athletics, meeting with teachers, encouraging proper bathing and helmet wear – a parent of a child with diabetes (or insert countless other chronic disease or special need) has the awesome responsibility to keep the child alive, safe and healthy while at the same time instilling in the child the belief that they are “just like everyone else”. (Longest run-on sentence this month.)

So this prompt asks what my top 3 challenges are.

  • Encouraging and then allowing my kids varying levels of independence with diabetes care. I want my kids to feel confidant in their own ability to manage their diabetes. I want them to be able to take care of themselves when I’m not around. At the same time I worry constantly when they are not with me. (Less with my dear daughter since she is older and seems to be a bit more responsible).
  • Remembering to ALWAYS treat the kid first then the diabetes. Example: First thing in the morning – “Good morning sunshine. Did you sleep good? Hey did you check your sugar yet?” NOT – “What was your blood sugar?”  Same thing goes for when they get home from school or a friends and never let the last thing I ask them at bedtime be about their blood sugar.
  • Not missing Middles. My middle kiddo (Middles) is my only child WITHOUT diabetes. A lot of time and energy each day SEEMS to be devoted to diabetes care. Questions about blood sugars, infusion set changes, supply gathering, testing and dosing – BLOGGING – appointments, advocating, connecting – these are all things that may take as little time as a minute or as long as a couple of hours – regardless of the actual amount of time consumed, to a ten-year old it may seem as though the entire day can be about diabetes and not about him at all. I do my best to take an active interest in different things Middles is engaged in each day. I do occasionally try to avoid taking him with to endo appointments but that isn’t always possible. He is, although “Not By Choice” (favorite song, written by George Simmons you can find it in iTunes and YouTube) a sibling of children with diabetes and his life is nearly as wrapped up in diabetes as their lives are. Still I do try to give him extra attention each day.

A BONUS Challenge – Taking care of myself. I don’t exercise hardly at all, I drink my weight in coffee (best way of getting caffeine into my system without an IV), I occasionally binge eat chocolate when truly overwhelmed, I don’t sleep nearly enough and I have allowed guilt to set up shop in my head. I know I need to take care of myself – I know I need to change habits to live healthier. I know I need to be easier on myself and to be honest I have improved dramatically over the last 8 months (basically since I became involved with the DOC – Diabetes Online Community). Having a support network – whether online or in person is key to building/keeping a healthy mind and body. I’m getting better everyday thanks to the DOC and WEGO Health.

 

What do you see?

Im a day behind (lol – started this post on Wednesday – didn’t finish it and now I am 3 days behind) but for the next week I will be taking part in the “Advocating For Another Carnival 2012” via WEGO Health.

As a parent of two children with Type 1 diabetes and a third kiddo that has had some pancreas hiccups I spend a substantial amount of time advocating, teaching, sharing, and learning. Why do I do it? For the following reasons….

We all have great photos of our kids and family having fun on vacation, playing in the yard, taking their first steps, learning to ride a bike, holidays, birthdays, etc. Unlike in the magic world that Harry Potter resides our photos don’t move. The subjects in the photos stay frozen for ever. The huge grin when they open a birthday gift, the look of pride when they learn to ride a bike, even the looks of annoyance as parents make them pose for yet another scenic photo will be forever still and thus enjoyed for years to come. However, the photographs and portraits don’t really say who the person is behind the smile. Is the person in the photo healthy, kind, funny, smart, sassy,  musical, athletic, etc.

Yesterday’s (Tuesday’s) prompt asked writers to “write” a portrait of those we advocate for.

Sweetstuff is a nearly thirteen year old that occasionally acts as though she is an equal with her dad and I. She is very independent – except when she isn’t. She has huge round green/blue eyes that seem to be a window to her very soul. Eyes that I want to protect with every once of my being because with diabetes retinopathy is a common complication.

Sweetstuff’s smile is wide and welcoming shared with strangers and friends alike. Photos rarely show the times her smile is upside down due to high/low blood sugars. Sweetstuff is kind to all and a loyal friend. She doesn’t judge, she doesn’t care about economics, color, race or religion; although she may ask questions about things she doesn’t know. She has a thirst for knowledge and believes that asking questions is the best way to learn.

Sweetstuff loves singing and will soon be in the String Orchestra at her middle school. If it were me I would be terrified that I wouldn’t be good enough – she sees it as an adventure (I secretly hope she chooses the Cello). She is wicked smaht at math but her spelling is not so great (she gets that from me – the poor spelling not so much the math). She worries about diabetes complications and sometimes she gets overwhelmed with all that is diabetes. She loves animals – especially cats and owls. She hopes to be an opthamologist one day. She is disappointed in herself for not having learned a sport at a younger age (seriously I think she thinks she is over-the-hill). She can be shy in large groups and even more so when meeting someone new – this is often confused with arrogance. She is confident in many of her abilities but very insecure about who she is (makes me sad).

Sugarboy is 8 and entering the third grade. He was diagnosed with Type 1 Diabetes when he was just 2 years old. He doesn’t remember his life without diabetes.

Sugarboy is loved by all who meet him. He is kind, smart, happy and his smile is infectious. He loves soccer and puppies most of all in life – Lego’s take a close third. He is a pesky little brother and a great playmate to Middles and Sweetstuff. He never fails to say good morning and good night. He is excited to be starting a new school but misses his old school terribly. He is small for his age but as brave as brave can be. He has HUGE green eyes and his brown hair is always disheveled (if he ever needs glasses he could quite possibly be mistaken for Harry Potter – yes another Potter reference – yes I’m a nerd.)

He has owned diabetes since his first day back to pre-school two weeks after his diagnosis when he entered the classroom and announced to all, “gather round friends, I have diabetes, watch me check my blood sugar.” He has never let diabetes stop him from excelling at soccer and swimming or anything else. He can check his own blood sugar, count carbs and dose insulin (via his insulin pump) in the time it takes for to hear the title sequence of Phineas and Ferb. He often sleeps with his arms curled under his head, his knees tucked up under him and his bottom sticking up in the air just like he did as an infant. Of course this sleeping position makes checking his blood sugar at 3am a bit difficult because as I try to tug an arm out from under him he seems to develop superhuman strength insisting to keep his hands hidden beneath his pillow – all while sound asleep. The boy can also down a juice box in 4 seconds flat – even while sound asleep.

My Middles does not have diabetes (right now). He is at a high risk though since he has tested positive for antibodies that are commonly present in those who’s immune system is attacking their own body. (Sweetstuff had the same antibodies two years prior to dxd.) BUT right now he does NOT have diabetes and we pray daily that the signs are wrong – meanwhile he will begin a study with TrialNet that may help delay or stop the development of Type 1 diabetes.

Middles is a textbook example of a middle child only he has it much worse than typical middle kids since both his siblings also have Type 1. He struggles with jealousy, fear and sadness. He get’s jealous of Sweetstuff and Sugarboy for all the extra attention he perceives them receiving. He is afraid he will develop diabetes and fears for his brother and sister’s safety. He is sad for them too – he hates being around for infusion set (insulin pump thing) changes and worries when his little brother has a low blood sugar. He recently shared with me how angry he is that diabetes takes up so much time and how he thinks it makes my life hard. (Lots of hugs for that one)

Middles is tall for his age – and skinny – too skinny (scares me cus he seems skinnier lately – goes back to high risk for diabetes). He, like his siblings, has huge bright eyes – only his are more blue than the other two (more like his daddy’s eyes). He has sandy brown hair that seems to always need to be cut and is always in his eyes. He has a lazy eye and slight astigmatism which requires him to wear glasses or contacts. One would think that in this day and age kids would no longer be picked on for wearing glasses but that is not the case. Kids at his old school in TX took great pleasure in teasing him for his glasses. He had begged for contacts since he was 8 years old. We gave in when he turned 10. He is great at caring for his contacts and his confidence increases when he wears them. It is sad that kids pick on differences – I blame the parents.

Middles loves skateboarding, biking and video games. He enjoys athletics but has not found the best fit yet. His depth perception is not fantastic with his lazy eye so ball handling suffers – yet this has never hampered his desire to play and always tries to improve. He is one to try anything – food, sports, thrills, and meeting new kids. He is extremely outgoing – always excited to introduce himself and get to know others. He is so very kind, generous and polite. He doesn’t utter a request without a “please” and rarely forgets to say “thank you”. He will help all who ask and wouldn’t dream of putting another down (well if you don’t count siblings).

He is destined to be a lawyer or politician for sure. He will argue with all those he feels have wronged him or another. He will insist on being heard and will not easily concede if he feels he is in the right. (This does not always go over well in the classroom environment but we are working on it.)

Well – this was likely one of my longest posts and if you made it this far you should get some sort of prize – alas I have nothing but a heartfelt “thank you” to offer. I started this blog to sort out my own head. I am grateful for this prompt because it made me sit and give thanks for my wonderful children who teach me as much as I them.

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.

 

My Own Devices

My own Devices….

Day 23 Health Activists Writers Blog

Today’s prompt: Health Activist Choice Day – Write about whatever you want.

As a parent of cwd (children with diabetes) when I think of Devices I automatically think of my kids insulin pumps, glucometers, and the Dexcom that is still sitting in its box getting dusty. All the pwd (people with diabetes) or other parents of cwd that stumble upon my blog (or are guilted into reading it because I self-promote it 5 times a day on twitter) also very likely think of pumps, glucometers and CGMs (continuous glucose monitors – ie Dexcom). People without diabetes that read the word ‘Devices’ likely think of phones, MP3 players, or tablets.

However – I am not thinking of electronics during this post. Here is what I am thinking of:

Device: A plan or a scheme for effecting a purpose.

Why do I advocate? Why do I volunteer for the JDRF presenting the Kids Walk to Cure Diabetes? Why do I share great blog posts (others as well as mine)? Why do I share information about new technology and promising research? Why do I do my best to change stereotype perceptions regarding diabetes (all types)? Why do I insist on 504 plans for my kids? Why do I take my kids to diabetes camps? Why do I form a JDRF walk team? Why do I spend hours writing a blog? Why do I spend hours tweeting with other pwd and parents of cwd?  Why why why why….

Because I have a plan with a purpose – to end diabetes, to end misconceptions, to end bullying, to end sadness, to end confusion, to end it all.

I advocate for those with diabetes because change happens when we make it happen through action. Writing letters to government officials to support diabetes research lets those individuals know we are watching and we vote.

I volunteer for JDRF because my time and ability to speak in front of large groups (including kids) is more valuable than the modest amount of money I can afford to give (although I give that too). I educate the kids regarding healthy life style choices to hopefully prevent type 2 diabetes (although not all type 2 diabetes is caused by poor lifestyle choices) and I educate the kids about what Diabetes is, that it isn’t contagious, that a person that has Type 1 didn’t do anything wrong to get it, that a person with Type 1 can do everything a person without Type 1 can do but also has to do extra things to stay safe, I educate them on how they can help end diabetes by supporting organizations that fund research. The Kids Walk is my most favorite thing to do regarding diabetes education.

I share diabetes blogs on Facebook, Twitter and Emails because sharing our struggles, successes and failures benefits everyone effected by diabetes. It isn’t because misery loves company – it is because we need to know we aren’t alone – we aren’t the only parents that missed a high at night, or a low on the playground, or whose child is being non-compliant.

I share information about new technologies and research because it provides hope, it shows things are moving forward and even though the 5 Year mark (the number of years we are told at diagnosis in which a cure will be found) passes without a cure – we see progress.

I interrupt strangers I overhear speaking incorrectly about diabetes to educate them – to change the worlds perception of either that a) me or my kids did something wrong and thus got diabetes b) only people who are obese and lazy get Type 2 diabetes c)  people with Type 1 cannot eat a cupcake d) diabetes is easy.

I insist on 504 plans for my kids at school because I want them in a safe environment, I want them protected, I want the schools to know I WILL hold them accountable if they deny my children the care they require to stay safe.

I take my kids to diabetes camps because at camp my kids feel normal. At camp my kids see that they can do everything they dream of despite diabetes. I take my kids to camp because meeting other kids with diabetes helps my kids feel less alone.

I form a JDRF walk team to support an organization that funds research that will lead to a cure and end all the madness. I form a team to invite those without diabetes to get involved. I form a team to support my children.

I write a blog because it provides me a place to share, vent, whine, advocate, educate, support, laugh, and even cry aloud through my words. I write a blog because at some point in the future my kids will want to know “what did I do to end the madness” (although I am fairly certain they see and hear all I do). I write a blog because maybe there is a parent out there with a newly diagnosed child searching the Internet for information – maybe they will find my blog and they will see that while they have entered a world of madness there are others here to help them. I write a blog because one day maybe one of my dreams of writing a book or becoming a motivational speaker or a presenter at conferences will be realized and I will have all my past posts to draw inspiration and information from.

I spend hours a week tweeting with other pwd and parents of cwd because I don’t know everything (shhhh don’t tell my kids) and I can and have learned so much from the people I follow. The DOC (diabetes online community) is like camp for me – it allows me to believe I can do everything everyone else is doing and mostly I AM NOT ALONE.

My devices are not a part of a scheme – they are not intended to be tricky or mischievous.

My devices are fueled by my desire NEED to end the madness.