Conversations With Strangers

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Diabetes Blog Week – Day Two – A Poem.

Conversations With Strangers

Can they eat that?

Yes they can.

Is that some sort of Mp3 player?

No, its his pancreas. 

Doesn’t that hurt them?

Sometimes. 

I bet they get used to it.

Sometimes.

Will they grow out of it?

No.

But they’re not fat.

It’s not a ‘fat’ thing.

I heard cinnamon will cure them.

No it won’t.

Maybe they should try a carb free diet.

Won’t cure diabetes.

So your daughter shouldn’t have kids?

She can have children.

Didn’t you breast feed?

I nursed them all for 18 months.

Shouldn’t they do that in the bathroom?

No. they’re good here, thanks.

My grandpa had diabetes, lost his leg before he died.

Sorry for your loss. 

You know diet soda is poison. 

Thanks for your thoughts. 

At least it’s not cancer.

Yes, at least it’s not that. 

Posters Save Lives

A day behind with Day 5 of Health Activists Writers Month Challenge.

(In my defense I did post yesterday and yesterday’s post was viewed more than any other post I’ve ever written – it just wasn’t my Day 5 post – Thank you to all who viewed the post and shared your thoughts – your support means so very much.)

Day 5 Challenge: “If I could do anything as a Health Activist…” Think big today! Money/time/physical limitations are no longer an issue. What is your biggest goal that is now possible? And/Or What’s your one, three, or five-year plan for your Health Activism?

If money and time were not issues I would work towards educating the world about Type 1 Diabetes. I would use either existing posters (International Diabetes Foundation has created one) and/or create new posters, flyers, videos about the early symptoms of Type 1 diabetes to distribute to all doctors offices (pediatric & general health care providers), school health offices and hospitals. I mean truck loads of them and I would hire folks to hang the posters so they didn’t sit rolled up in some back office where advertisements for over priced meds go).

The posters would include illustrations of children and adults doing the things that many parents and patients miss (or explain away) prior to diagnosis or after it is too late to save the child/person.

  • excessive thirst
  • excessive urination
  • excessive hunger
  • excessive sleepiness
  • headaches
  • leg aches
  • rapid heart rate
  • mood swings
  • weight loss

The posters will also identify myths about Type 1

  • isn’t caused by too much sugar
  • there is no cure
  • one cannot grow out of it
  • well-managed diabetes is the cause of absolutely nothing (Dr. William Polonsky)
  • complications can happen and will happen with poorly managed diabetes
  • a person with type 1 diabetes is always insulin dependent
  • a person with T1 has to check blood sugar at least 4 times a day – yes it hurts
  • a parent of a child with type 1 diabetes did not cause it to happen
  • a person with T1 can do everything everyone else can do

The posters will also encourage newly diagnosed to seek support within their community and online. There is no reason (unless by choice) a pwd or parent of cwd should ever be left to feel alone.

While distributing the posters I would offer short classes to all health care providers about Type 1 diabetes. That seems weird right – I mean they are way more educated than I am – in a way that one would think they should know (medical school). Still I’ve heard of many health professionals missing the diagnoses Type 1 diabetes. I’d also educate school staff – I mean come on teachers spend more time with their students than parents spend with them during the school year. I mean actual clock hours not the quality of time.

I would ask that the posters hang in every exam room, hospital elevator, and school health office. I mean come on, how many times do we read the posters in those rooms while we wait for our HCPs? Visit after visit we read the same posters. The knowledge will sink in. Most people who read the posters will never need the information. BUT – the message will reach those that one day (some random Wednesday) will need it. Maybe it will reach the friend of a teen that has been showing the symptoms and the friend will mention it to their friend. Maybe it will reach the teacher who has a student that’s always leaving the classroom to use the bathroom. Maybe it will reach a grandmother who is keeping her grandchildren for the weekend. Maybe It will save lives.

When I lived in Texas I volunteered with the Austin JDRF (Juvenile Diabetes Research Foundation). I would visit elementary schools with a large cardboard picture of the Pink Panther and boxes of fundraising envelopes. I would meet with every grade level for about 45 minutes during their PE classes. During the presentation I would talk about what the JDRF is, what diabetes is, what types there are and what causes the different types, how the kids can stay healthy by eating right and exercising, how type 1 is not caused by poor choices, why pwd need insulin, how insulin is used in the body, what happens to a pwd if they don’t take insulin and that there is no cure. The last few minutes I would invite the kids to ask 10 people for a $1 to help fund a cure.

This was a very interactive presentation. I asked the kids questions, allowed them to give examples, maybe tell short stories, I had them get up and move around. If there was a child(ren) with diabetes in the school I would invite them to talk about it (I met with the child ahead of time so if they did not want to talk I did not single them out).

I believe I reached these kids. In fact I know I did because parents would tell me how much their child shared with them when they got home.

I haven’t been able to get that involved yet here in CA. I’m still unpacking my life. I hope to get the program moving in my area next school year.

Which brings me to my 1 year, 3 year, 5 year plans.

1 year – bring the JDRF kids walk program to the East Bay area of San Francisco

3 year – be invited to speak at conferences to adults and/or children about diabetes awareness, diabetes in school, diabetes and siblings, diabetes and peer pressure, diabetes and depression (in regards to parents of kids with diabetes). Any and all of these topics are ones that I am working on a plan for.

5 year – write a book – this is the scariest of all for me to think about (yes way more scary than talking in front of huge crowds – that’s easy for me). So many books have been written. Really wonderful, informative, funny, heart-warming books about all things diabetes. What on Earth would I have to share that hasn’t been shared already?

So basically give me money and time and I will make a poster – a priceless poster that can/has/will save lives.

 

Diabetes In A Cup

First, let me apologize for not having blogged in some time. 2013 started off crazy busy, then there was the flu that took down my boys and me, followed by a week of catch up with life, followed by a great visit with friends from TX that included sneaker waves, boobie cars, and stupid dune yard people. I wish I could explain all of the shenanigans but some stuff is better left unexplained.

So what prompted a great need to blog today a week ago? Ignorance and Youth. (yes I started this a week ago – someone please stop the merry-go-round – I’m getting dizzy)

My dear daughter has guitar lessons each Thursday evening. Unfortunately those lessons take place during the same hour that DSMA hosts DSMA Live a Blog Talk Radio show with amazing guests and hosts. Sorry I digress – although you should totally check out the show which is on Thursdays at 8pm central time. You can find links on the DSMA webpage.

Ok so each Thursday while my daughter is in her lesson I step next door to the coffee shop (you know the one). Nearly every Thursday the same baristas are working. The manager has learned my name as well as  my favorite drink and she greets me kindly while pulling a venti cup for me while the younger gal rings up my order. Both are very friendly and my drink is always spot on delicious.

The young one – (oh to be young and have only 2 decades of footprints on the earth) is sweet and always smiling but alas she has no filter between her brain and her mouth. I’ve witnessed her naivety and her immaturity numerous times with regards to sharing too much personal information about her boyfriend and how painful her nose piercing was.

Her willingness to share a bit more than most, and her lack of awareness of the people (guests) around her never bothered me. I shrugged it off – she is young.

Until – last night while fixing up a number of blended mocha caramel frappa type drinks she refered to them as “diabetes in a cup”. She wasn’t talking to me but when I hear diabetes my ears perk up since it is a language I speak. I was reading an email while I waited for another employee to grind my coffee.  She was talking to the other employee. That employee didn’t hear her (or chose to ignore her) because she said it again – “Yup, Diabetes in a cup”. Of course at the second mention of it I inquired as to what she was referring. She explained she was making drinks for her boyfriend and his mom since it was the end of her shift and they requested she bring them drinks. She explained the ingredients and again said – “so its diabetes in a cup”. (Im not sure the coffee company would be excited about her renaming items on the menu.)

diabetesinacupphoto

HUH???

At this I said, “I have two kids with diabetes.”

Of course she stopped in her tracks and looked at me like a 2-year-old caught reaching into a candy jar. Then she opened and closed her mouth a couple of times, clearly unsure of what to say before she finally said “oh I’m sorry”.

I told her they have Type 1 diabetes which isn’t caused by eating too much sugar. Which she replied with, “so they were born with it.”

I explained – No, not born with it. They developed it years later at different ages. They didn’t get it from eating the wrong things though. It’s an autoimmune disease. They didn’t do anything wrong to get it and I assure you I wasn’t giving my 2-year-old mocha caramel frappas. There are different types of diabetes but you should also know that some people get Type 2 diabetes without being overweight or eating poorly.

Of course then she told me her grandpa has diabetes.

Ok – out of curiosity I asked “Which kind?”

She didn’t know. I then asked if her grandpa uses insulin.

She said, “Oh no, it’s not that bad.” (Yes I cringed)

Thus I said, “ok well if he doesn’t use insulin which is a medicine that allows people with type 1 and many with type 2 to stay alive than I would guess he has Type 2”

Her response – “I don’t think so, he’s not fat.”

(Didn’t I already cover the fact that a person doesn’t have to be overweight to have diabetes – was she not listening – I’m educating her – she should listen)

During our conversation she was kind, polite, respectful. She apologized numerous times. Although at this point she was glancing at the now melting frappas sitting in the drink holder waiting to be taken to others. I wanted to let her off the hook but needed her to understand her words affect others.

I told her (after her 5th apology) – “I’m not mad. I know you didn’t mean anything by what you said. But I hope you will consider what you say in the future. For all you know someone else overhearing your remarks could have diabetes or love someone with diabetes.”

At this point she thanked me. Im not sure exactly what for. Perhaps for not tattling to her manager. Perhaps for educating her. Perhaps for imparting a real world lesson about filtering ones thoughts before allowing them to escape via the mouth. Perhaps for just letting her off the hook and allowing her to leave.

I hope she heard listened to something of what I said. She is young and has so much to learn about – well everything. She is also kind and meant no harm and while I was angry about it initially I understand why she said what she said. The general public – (which until Feb 7th of 2007 included me) isn’t educated enough about diabetes. Commercials, adds, even crack pots like Dr. Oz don’t share facts effectively.

More education is needed about diabetes. Pediatric doctors and school health offices need posters hanging in the exam rooms that share the symptoms of Type 1 (this would save lives), primary care physicians need to provide nutritional counseling to adult patients (not after a person is found to be at risk but before) and Hollywood needs to learn about diabetes before including it in TV shows, reality shows, and movies. IMHO.

 

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.