Use Your Words To Protect Health Care

Did you know that liquid DayQuil is an excellent chaser for Robitussin?

Day 4 of a cold that won’t quit.

Day 2 of Diabetes Blog Week.

I worked all day teaching a classroom of kindergartners and explaining to them for the second day that I couldn’t high-five, shake hands, or give hugs because I didn’t want to share germs. One little friend suggested we just give each other thumbs up throughout the day.

Is my nose really that big? Don’t answer. Gosh I hope the bags under my eyes were not that prominent when I was teaching. And this is why I don’t take selfies and I mostly stay out of photos unless they are with someone cooler than me. But I have no cat photos and a photo of DayQuil was more work that a quick selfie.

On to Day 2 and the Cost of a Chronic Illness.

And now a photo of me giving the thumbs up seems insensitive because chronic diseases are ridiculously expensive, so much so that some people just can’t afford to stay alive.

Here is the actual prompt taken from the Diabetes Blog Week FB page:

Insulin and other diabetes medications and supplies can be costly. Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage. So today, let’s discuss how cost impacts our diabetes care. Do you have advice to share? For those outside the US, is cost a concern? Are there other factors such as accessibility or education that cause barriers to your diabetes care?
You can find a list of today’s posts here: http://www.blenza.com/linkies/links.php….

So far in my adult life I have never been without insurance.

While in college I was under my fathers policy.

While in the Air Force I was covered by the military (taxpayers, thank you – having my daughter while active duty cost me $37 which was the cost of my food while in the hospital. I had to pay it because technically the government gave me a food stipend in my pay, so if I didn’t pay for my food while at the hospital it would have been double dipping in the taxpayer funds).

After finishing my tour in the USAF I was under my husbands insurance policy through his private employer and I had both my boys while he worked for the same employer. Over the 12 years he worked for the same employer we watched our copays increase, our premiums increase, our deductibles increase, and our in network physicians decrease.

Then my husband was part of a huge layoff – basically the company thinning the higher paid employees in favor of the lower paid employees. Technically he somewhat volunteered to be part of it. He was ready for a career change and knew the severance package would be enough to get us by while he searched for another job. With the layoff we were invited to purchase COBRA. Basically COBRA allows individuals to continue on with their private company insurance for a period of 6 months by paying the premiums in full themselves. This was a huge deal since we had two children with diabetes at the time. NOT as big of a deal as a lapse in coverage could have been prior to 2012 or could be in the near future. (I rarely share any political opinions – actually I have never shared a political opinion on my blog – but anyone living with a pre-existing condition or who has a child or loved one with a pre-existing condition is very likely aware of the current American Health Care Act bill that recently passed the House floor and is due to be voted on in the Senate later this summer or early fall.

Be afraid enough to BE LOUD in your advocacy against approving the AHCA in it’s current form and use your voice.

Don’t know how to contact your Senators to ask them NOT to vote in favor of AHCA – stay tuned later and I will share an easy way to find out who your Senators are and how you can contact them. I want to stress this is not a red or blue issue. It is not anti-Trump or Pro-democrat – It is pro-humanity and caring for all the people of our great nation. Your advocacy against the AHCA is not a political endorsement for either party. It is an endorsement for compassion.

Crap – I digress.

COBRA is expensive – we have had to use COBRA twice in our 20 years of marriage. Each time COBRA premiums have been a minimum of $1500 a month and that isn’t including all the normal prescriptions and doctor co-pays.

Imagine paying $1500 a month with no income. How many working families do you know who could dish up $1500 a month for insurance with no income? How many families do you know who have a 3-6 month safety net in the bank, meaning they have enough cash to pay their mortgage, car payments, insurance premiums, food, and other debts?

Without insurance the cost of managing a chronic illness for a month can be close to the same as the insurance premiums would be, or more.

With the current AHCA that passed the House people with pre-existing conditions can be denied coverage (the bill allows states to request a waiver that would allow them to set their own pre-existing rules) if there is a lapse in coverage (see getting laid off and not being able to afford COBRA). The bill also requires those with a pre-existing condition, as well as other groups, to pay higher premiums. ^^^This is obviously a very watered down synopsis of the AHCA that will affect people with pre-existing and doesn’t even discuss how it reduces and/or eliminates other protections for those most often marginalized, including women and reproduction services such as maternity care and birth control. (fun fact – erectile dysfunction is not listed as a pre-existing condition – go figure.)

This post is already wordy and maybe even a tad preachy so I will stop here and hope that you will contact your senators and share your concern regarding the AHCA. I know the Affordable Care Act (Obama Care) hasn’t been without issues and we as a nation do need to improve how we protect the most vulnerable of our nation, improve access to affordable care for all people, and hold big pharma accountable when they increase costs of medications that are not optional. (The cost of insulin is a post for another day.)

Here is a link you can use to find out who your senators are: Find Your Senator

You can also send a text  RESIST to 50409 – and follow the instructions on the text you receive back. (Yes I know it says ‘resist’ and for some that may appear to be partisan – ok – it has become a partisan word used by the left in regards to the current administration BUT please note that diabetes and other chronic disease do not care if you are red or blue. Chronic disease does not discriminate based on political ideologies. Texting the number above and asking your senators to vote NO on the AHCA in its current form does not brand you left or right. When you email, call, or text your senators share your story. Ask them to protect your health care and the health care of those you love by writing a health care bill that protects those with pre-existing conditions and those most vulnerable such as the young and old.

Ps. It is Friday. I started this post on Wednesday, already a day behind then. Now I am four days behind. The good news is am feeling better and I have the morning before work to try to catch up and read all the posts I’ve avoided because I don’t like to risk being influenced by others thoughts before I write my own post.

I did have a fun afternoon with my kinder class yesterday creating a kinder version of Edvard Munch’s The Scream. We had spent the week learning about the systems of the human body, sans reproductive system because they are kinders. Their favorite topic to discuss each day as we reviewed what we had learned the day before, was the brain and how basically the brain does all the heavy lifting including sorting out how information that comes into the body is processed and how the brain controls, and is affected by emotions.

How discussing national health care policy likely makes us all feel.

 

 

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.

Key to Happiness

Seriously now I am four days behind.

I’m writing for Day 2 of the Health Activists Writer’s Month Challenge (even though in the comments for day 1 Stephen said I could have a pass since he counted my first post as two. Thanks Stephen.)

Day 2 prompt

“What do you think is the key to happiness? Is it being able to overcome a hard time? Laughter? Maintaining a positive attitude? Tell us what you think and why”

First I want to share a FB status I wrote a bit ago:

“I’m really tired of hearing “happiness is a choice”.
Kindness is a choice. Smiling at others despite sadness is a choice. True happiness is not a choice. A person with depression wants nothing more than to be happy. The worst thing a person could say to someone who isn’t ‘happy’ is ‘happiness is a choice’ which implies the person who is ‘unhappy’ is choosing to be unhappy.
Much love to my friends who could use a hug right now. Hang in there. You’re important.”

So what do I believe is the key to happiness? Wish I knew. Wish there was one answer that would fit everyday.

When I was in the court-house waiting to be selected or dismissed for jury duty I met a man.

He was 96 years old. He was tall and fit looking. He had a bit of a scruff, like he hadn’t shaved in a day or two. A number of grey hairs mixed in with the black. Imagine to still have some colored hairs mixed with grey at after 96 years of living. He didn’t move fast but he stood tall. In the elevator I asked him his secret. He said eat veggies. He had served in the US Army during WWII both in Europe and the Pacific. His eyes were so bright and so full of life and love. I would bet he knew sadness in his life though. I can’t imagine many can get to 96 without knowing great loss. Not to mention being a black man born in 1920 and living through wars, the great depression, segregation, and the civil rights movement. Still he looked happy and content. I wish I had asked him how. If I could meet him again I’d buy him a coffee and just listen to his life and I would be so grateful for the opportunity.

So the key? I have no idea. My key to happiness changes. Some days I find happiness in just watching my kids laugh. Some days I find it in a clean home. Some days it’s a new haircut. Some days it is a long phone call with a far away friend. Mostly I am happy when I am laughing. So maybe it is laughter mixed with veggies.

Something else I’ve shared recently on my FB was this thought. It came to me after an argument with one of my kids. It wasn’t really an argument. It was more me telling one of my kids they couldn’t do something they wanted to do and them getting angry.

“Be in charge of the energy you bring to every moment.” 

I’m not sure if that can be considered the same as “Maintaining a positive attitude”. Not everything in your life will be positive. A death, a diagnosis, divorce, financial difficulties, the loss of a job, etc. – those are not things one can be positive about. BUT a person can always choose the type of energy they bring to the moment.

Happiness is a slippery little sucker. I think the only key is to how you respond to difficulties and the credit you allow yourself once through it. Some days you will be more badass than others.

***I am participating in the Wego Health – Health Activist Writer’s Month Challenge. It is never to late to sign up and get the prompts. Great for anyone struggling with writer’s block. Click >>>>> link to sign up.

Stream of Consciousness

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I’m a mom with three kids with diabetes. It is a thankless job. A job that comes with many arguments, tears and fears. A job that requires a lot of attention much of the time and a still a job that requires me to back the hell off much of the time. There are fights each week, who didn’t check often enough, who ran out of insulin, who forgot to charge their meter or insulin pump, who ate three bags of Cheetos and left the bags under the couch cushion, who forgot to bolus, who skipped PE by telling the teacher he/she was low when in fact no check was done, etc etc etc (is the three ‘etc’ redundant?). It is also a job that includes; way to go, great job, I know it’s hard, I’m sorry, you’re doing great, just take a juice with you and have fun, I’m proud of you, it’s not your fault, thank you for checking, go have fun, let’s go get ice-cream, who wants a brownie, etc etc etc. It is an exhausting job with late nights, small hour alarms, neglected house work, twitching eyes, and an anxious pounding heart – thundering in my chest as I try to navigate the crashing waves of success and not-quite success. It is a proud job with a star soccer player, a dedicated lacrosse player, excellent grades, amazing friendships, funny moments, big hugs, bumped knuckles and high-fives. It is a job of advocacy with tweets, Facebook shares, diabetes mom lunches, camp committees, letters to congress, educating the public, writing this silly blog, and conferences. It is a job of worry because often diabetes brings a sidekick called depression – for the kids with diabetes and the caregivers who struggle to be the rock. Will my kids battle mental illness along with a chronic illness? Will they feel important and whole despite the crazy that diabetes is? Am I doing all I can? Could I be better? Will my kids grow to be the badass humans I know them to be? Too many tears. Too many days feeling lost and confused and questioning every parenting moment I’ve had. I look at my kids, I watch them sleep, laugh, and play and I know that at those moments they are safe and happy. I can’t fix it all. I can’t take the pain away. I can’t take their diabetes away. All I can do is make sure they know I love them. Make sure they hear often how important they are. Make sure they know it isn’t their fault. Encourage them to always try their hardest and ask for help when they can’t. All I can do is take it a day at a time loving them despite poor choices and things bigger than they are. It is hard and some days I just don’t know I have the strength anymore but there are no alternatives. We keep swimming and spend more time rejoicing in the moments we are given. Don’t look back – we aren’t going that way. Things will not get easier but we will get better at navigating the course and reboot when needed because this shit changes all the time. My head hurts, my eye twitches, and my chest is tight. Yet I got up, I showered, I got dressed, I hugged my kids and today is a new opportunity to love those around me.

NOT a #firstworldproblem

Caution – I am not done typing but currently my word count is 683, if you would like to skip all the blah blah blah – go HERE, do what you know to be right and go on with your life.

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Tomorrow is Valentines Day. Some of you may have a special Valentine; a spouse, a boyfriend or a girlfriend. Some may have children you share Valentines with and of course friends too. A few generous folks might bake heart-shaped cookies or Rice Krispy treats (hint hint Danielle) and leave them with neighbors. Maybe your Valentine has four legs and unlike some significant others that come and go will love you unconditionally, unless the four legs are on a cat because then it is a crapshoot.

Many of you will purchase boxes of chocolates or perhaps chocolate covered strawberries, bottles of bubbly, tacky stuffed bears and monkeys, and some may even give/receive jewelry – lucky ducks – I mean if you like jewelry.

The most popular item purchased today and tomorrow – Roses. Ah the sweet perfume of roses. I walked through the floral dept of our local grocery store yesterday on my way to the produce. I may have lingered and allowed the sweet aroma to penetrate deep into my psyche before continuing on to the blue berries (which I may have opened and consumed unwashed while shopping). I detoured back through the floral department two more times to allow myself to be engulfed in the sea of olfactory blissfulness.

I must admit I was tempted to purchase a bouquet. Truly I was. I considered it. But no. Not this year. Not for 3 years now. I haven’t purchased or received roses because I’d rather save a life.

Pssst – We are almost to the diabetes part.

I know for many of us it may be easy to forget there are kids and adults around the globe that do not have access to the life saving tools and medications we have in the more developed nations.

Last week I woke up to a warm refrigerator. It wasn’t just ‘not cold’ it was warm. The warmest part was at the very top near the butter compartment. So, you may ask, (not really because if you are reading this blog you are likely part of the diabetes world and know full well what is kept in the butter compartment of a refrigerator in the home of a person(s) with diabetes – typed in one breath) why does it matter that the butter compartment was the warmest? We keep our insulin in the butter compartment of the refrigerator. Insulin should be kept at a constant temperature. Different brands of insulin vary in what they say is the ideal storage temperature is but it usually isn’t 82 degrees fahrenheit, which is what the thermometer in my fridge told me was the temperature inside the fridge.

Well @#*!$%@*!

I wasn’t sure if the fridge was fully closed when I opened the door. It sometimes doesn’t close completely – it will be just a smidgen ajar sometimes. My middle child was the last one in the fridge the night prior and he may have left it slightly ajar allowing the light to heat the interior of the fridge all night long and basically cook our insulin.

9 vials. We had 9 vials in the fridge. I had just ordered a 3 month supply for all 3 kids and 9 vials of the order fit into the compartment. The remainder is stored in the garage fridge. We lost 9 vials of insulin. I shared my frustrations on my personal Facebook page. Within minutes I had friends from around the USA offering to send insulin. I had received no less than 4 texts in the next 30 minutes as well offering the same. Those generous folks didn’t know I still had plenty of insulin in my spare fridge.

My problem – losing 9 vials of insulin as well as a couple hundred dollars worth of food (of course I had just gone shopping the day prior) is what we in the developed world call a ‘First World Problem’. Many of us recognize some of our complaints are only things we would experience in our developed nation….

“The post Super Bowl commentary caused my DVR not to record all of Blacklist” #firstworldproblem

“Starbucks was out of my favorite syrup!” #noideawhattodrink #firstworldproblem

You are likely wondering what the hell my fridge, the floral department and saving a life all have to do with each other. To help clarify my convoluted blog post – here was my FB post: (at this point you are wishing you skipped all this and just clicked the link above)

“Not sure if it’s broke or if the door was left ajar all night (I didn’t pay attention when I opened it) but the refrigerator is a balmy 82 degrees. Everything cooked including 9 new vials of insulin.” 

Edited: Since people are trying to be generous and commenting here or texting me after I shared this please note: I had just placed a 90 day order. only 1/3 of our insulin was in the kitchen fridge. We still have insulin enough for 60-70 days for 3 kids. We are fine – you do not need to send insulin.
Thank you for your generosity. BTW since everyone is feeling so generous maybe consider a donation to Spare A Rose, Save A Child IDF. I’m sharing Kerri’s link since I had it open and who doesn’t love seeing that smiling face. My kids will be fine despite losing 9 vials of life saving insulin, but there are kids around the globe who don’t have a stash in a garage fridge. Please consider skipping the roses this year – they die anyway and kids don’t need to. (PS. I did not break my refrigerator to set up a plea for donations – it kinda just worked out that way.)

For the cost of a single rose you can extend the life of a child with diabetes. (When I say the cost of a rose, I mean the cost a rose the couple of weeks before Valentines when distributors quadruple the cost due to demand)

Right now a dozen roses would cost you about $60. If you were considering purchasing roses this year it would be great if you could skip the roses all together and instead donate that $60 to the Spare A Rose, Save A Child program. Weren’t gonna spend that kind of cash on your Valentine? It’s all good all I really ask for is $5. Just $5 the cost of a single rose. The cost of a single rose can save the life of a child with diabetes.

Please click the following link and share some Valentines love across the globe.

Spare A Rose, Save A Child

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Thank you in advance for your generosity, kindness, compassion and support.

Chatty Cathy All about Diabetes Posters And Feet

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Sometimes good conversations come from chattiness – just saying.

My youngest has been complaining recently of intermittent pain in his feet. Both feet. Having two older kids I know about growing pains – also remember vividly the middle of the night howls of pain and calf massages. I can’t recall twin pain though – pain in both legs simultaneously. Also the pains for my two older kiddos nearly always came at night. Thus when Sugarboy began sharing his concerns about pain in his feet I became suspicious. My first suspicions were that he was trying to get out of chores or homework. But then he began complaining when he was doing something he wanted to be doing. Shortly after that he began complaining of the pain at night, in the morning, all day long.

Something is amiss. I put in calls to both his PHCP (primary health care provider) and his endocrinologist. BTW – for those not in the know – a possible (but more increasingly rare) complication of having diabetes for many many years is neuropathy, specifically and most often in the feet and lower legs. Thus, when a person with diabetes is feeling pain in feet or lower legs it isn’t something to be dismissed. Sugarboy is young, has had fairly decent ‘control’ over his diabetes and has ‘only’ had diabetes for just over 7 years – it would be extremely unlikely he would be developing any neuropathy. Still to be safe I did call the endo.

A nurse on his endo’s team called me back today. Of course the pain is gone today. While I’m not a fan of Murphy I do appreciate Sugarboy’s pain being gone (at least for now). Still the nurse and I chatted about the pain: when, where, for how long, type, etc. Also what activities he has been participating in, what types of floors we have in our home, how his sugars were at the time of the pain, etc. She didn’t feel it warranted a visit to the endo office but suggested I do take him to his PHCP to determine if he is experiencing any foot specific issues due to walking barefoot on hard floors or various activities he participates in.

Since that was sorted out I had asked if she could schedule appointments for all three kids in July. I had explained I was on hold for more than 35 min late last week trying to set up appointments and finally gave up. She apologized for the long delay then said how busy the clinics have been due to a much higher number of new patients over the last few months. Really? According to her, the number of new patients each month has been steadily rising for sometime and often the new patients are coming from ERs and even ICUs due to misdiagnosis or just missed symptoms.

So this is where I pipe up and get on my soap box about how if only all general health care providers had a poster to display in every exam room. I’ve said it before how valuable this simple tool would be. How many minutes do patients sit unattended in exam rooms – whether being seen for the sniffles, a hurt back, a well child visit, head pain or injury. Hours and hours are spent by patients in exam rooms. Most visits have absolutely nothing to do with diabetes. Still – while waiting don’t we all take a break from our phones to read various posters on the walls. One poster I have seen in nearly every pediatric exam room I’ve been in is the one with the child in a car seat that talks about current child safety seat requirements. In my general health care providers exam room there has always been a poster of how to do a breast exam and the signs and symptoms of breast cancer.

My point – put a poster in every exam room that identifies the symptoms of early onset diabetes.

  • Excessive thirst
  • Excessive urination
  • Frequent headaches
  • Blurred vision
  • Excessive hunger
  • Fatigue
  • Irritability
  • Pain in legs
  • Rapid heart rate
  • Nausea

The poster should also share that Type 1 Diabetes can be developed at ANY age by any person and is not specific to any body type. Type 2 diabetes is generally developed in later years but both types share the same symptoms of early onset.

For the majority of folks who visit the exam room the information on the poster will be just words on a poster. BUT for some those words read out of boredom could save a life – maybe their own, maybe a child’s. Some little voice in the back of a parents head while they watch their toddler down his 4th glass of water in 5 minutes will say “remember that poster?”

OR

The mom sitting with her pre-teen talking to the doctor about her daughters fatigue, irritability, nausea, and headaches will look past the doctor rambling on about a virus going around to read the words ‘excessive thirst’ and ‘excessive urination’ and will remember how thirsty her daughter was each day after school and how she has heard the toilet flush in the middle of the night more frequently – that mom she will say to the doctor “it couldn’t be something like diabetes, could it?” The doctor will initially begin to shrug it off but then something will click and he will offer the child a cup to fill. Moments later he will see the colors change on a chemical stick that indicate sugar in the urine or worse, ketones in the urine. Instead of being wrongly diagnosed with some obscure virus that pre-teen will be diagnosed early with Type 1 and misdiagnosis will be avoided.

Yes I chatted away with this nurse from my sons endo team and she listened and agreed and then said – you totally need to do this. Me? Do what? I can’t draw. I don’t have the resources.

So here is  my request – if you are blogger – share a blog post about posters in exam rooms. If you are an influential blogger with connections to large groups like JDRF and ADA ask them to take action. For those that don’t blog – send a tweet, share a Facebook status, talk to your local JDRF office or ADA office – do something. If anyone has a witty twitter tag we could attach to this please suggest one. Id love to see this trending so some group that could put their stamp on the poster will pick it the cause. It wouldn’t be a costly project just some ink, paper and distribution however the lives it could save are priceless.

Sorry for the long intro regarding feet – it was just how the conversation started.

I am grateful to the nurse that stayed on the phone during all my soap boxing. Incidentally we also discussed various pumps, CGMs, lack of CGMs for those on medicare and how it came to be that I have 3 kids with diabetes.

Sometimes I am a bit chatty.

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/

Roses are Red Violets are Blue You can Save a Child Too

Last year some very wise and humble members of the Diabetes Online Community (Kerri Sparling, Bennet Dunlap, Kelly Close, Manny Hernandez, Adam Brown,  and Jeff Hitchcock) started something. It is called Spare a Rose, Save a Child. The campaign runs Feb 10th to Feb 16th and helps support the Life of a Child program sponsored by the International Diabetes Foundation.

Basically those of us here in the US and other developed nations have access to tools and medicine that keep our kids and friends and family and for many themselves alive and thriving. Sadly as with many chronic diseases children in many less developed countries never make it to adulthood because there just isn’t medical care and tools available.

No child should die from diabetes because they didn’t have access to insulin. Life for a Child with the International Diabetes Foundation uses donations to fund medical clinics around the globe – those clinics with your donations save lives.

This February as we approach Valentines Day we ask you to consider skipping the over priced bouquet to instead help save lives. The flowers that smell oh so sweet will die in less than week but children around the globe don’t have to with your help. YES –  I am being dramatic but this cause is near and dear to me. While I watch my kids sleep I know they will wake in the morning because they have insulin. Can other mothers say the same in all the great countries of our world?

This valentines perhaps you will consider sharing a hug, a sweet kiss (or a passionate one), a quiet walk in a park, a sunset – something other than the roses and instead share those dollars with Life of A Child. You can make a one-time donation or sign-up for a monthly contribution (I wont even make you watch a commercial showing you the sad withering faces of dying children while Sarah McLachlan sings In The Arms Of The Angels)

I also won’t make you paint your own rose because despite what YouTube says about “anyone can paint a rose” or “paint a rose in 5 easy steps” – NOT everyone can paint a rose – well everyone can but it certainly won’t look like the roses in the youtube videos.

rosephoto

Don’t make my painting be done in vain. Donate to Life of a Child.

Please click the link to Life of a Child and donate today. Even if it is just the cost of one rose, after all giving just 11 roses is the newest trend to show you really care – I mean if you absolutely have to give roses.

Want to hear more about Spare a Rose, Save a Child? click the links below to read the about it straight from a couple of those who started it.

Kerri – Six Until Me (after reading Kerri’s post scroll down to find a list of all those in the DOC who have joined the campaign – you can join to by sharing Spare a Rose, Save a Child on your website – don’t have a website – share any of the posts (including this one) on Facebook, Twitter use #sparearose , and email – right after you donate a few dollars – or more.)

Bennet – YDMV

Kelly & Adam – DiaTribe

Jeff Hitchcock – Children With Diabetes (there is a link to Life of a Child on the left side of the page. After donating check out all the awesomeness of CWD – maybe consider registering for Friends For Life – you won’t regret it)

Manny and the DHF team – Diabetes Hands Foundation

If you missed any of the 3 links I shared to Life of a Child – click this awesome banner!

Spare_A_Rose_1Thank you for your support and generosity.

Changing the world and saving lives a few petals at a time.

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.

 

“Diabetes In His Eyes”

(not about diabetic retinopathy)

UGH UGH UGH

So this weekend Middles was watching Looney Tunes. I love Looney Tunes. Bugs is my favorite – laid back and witty. So after an episode Middles called for me. Told me I had to watch something, “it was so funny” he said “it says diabetes” he added. He rewinded the episode and shared a little ditty with me.

eyesphoto

http://www.youtube.com/watch?v=6j_65lYDFYU

Sweetstuff and Sugarboy were also watching. A minute into it I could see Sweetstuff’s anger rising. Sugarboy looked unimpressed. Middles was bouncing along with the tune.

Sweetstuff said “this isn’t funny. It’s wrong.”

I hushed her. I told her he doesn’t know all that she knows. Give him time. (This was said in a whisper to Sweetstuff to avoid Middles feeling ashamed or unappreciated.)

There are many things that upset me initially while watching the little cartoon. (not the least of which was the annoying sound of the singer’s voice, the fact that Bugs had to drink filtered water (tap water is just as good for us and doesn’t hurt the environment like bottled water), and the fact that few kids would know what a misua salad is.)

It reminds me of that famous meme about Billy and his candy bars.

This meme is stupid. It is wrong. It is misleading. It isn't funny.

This meme is stupid.
It is wrong.
It is misleading.
It isn’t funny.

I considered the cartoon for a good deal of time – nearly 24 hours now. I’m not as angry or frustrated as I was initially because the producers/writers/illustrators have good intentions.

They want kids to eat healthy. That’s always good.

Encouraging healthy eating is something all parents should do with their kids and loved ones.

What I don’t appreciate is linking poor food choices to diabetes. Regardless of the type of diabetes (not that the writers differentiated) it is not necessary to use diabetes to discuss healthy eating. Encouraging our loved ones to make healthy food choices is not best accomplished with scare tactics.

I’m disappointed in you Bugs. You broke my heart.

Oh – He Had It Bad

Contrary to what John Q. Public believes there are no levels of severity with Diabetes.

Wearing an insulin pump does not mean the pwd has it worse than another pwd.

Last night was Back To School night at my sons middle school. It isn’t really a time to meet the teachers and have a conference. Parents walk their child’s schedule and sit for 10 minutes in each class learning about what their child will do in class, class rules, and a bit about the teacher in the class. Then the bell rings and we have 4 minutes to get to the next class on our child’s schedule. The evening does not allow for chit chat between parents and teachers. Still…

My Middles is new to middle school and new to HAVING diabetes. Not so much new to diabetes as it has been living with us for over 7 years. Living around diabetes and living with diabetes are two totally different experiences. Sure Middles understands what diabetes is and mostly how to care for himself but he is still a bit green when it comes to understanding what all his numbers mean and what course of action to take depending on his schedule and what his numbers are.

For example, heading into PE with a 73 is not necessarily ok without eating a small snack first. Or finding a 49 on the meter, eating a fruit roll-up but not telling anyone that his blood sugar is low is not ideal.

Middles is not taking fast acting insulin yet. He is taking long acting in the morning which has helped his post meal sugars and fasting sugars stay within range but it has also dropped him below 70 more than a few times.

He and I are working together to help him understand the importance of checking often and recognizing what his body is telling him as well as who to tell if his sugars dip below 70.

Going back to Back To School Night – I didn’t introduce myself or chat with all his teachers. Just one. An important one.

It’s only the end of the 3rd week of school. Each teacher has over 200 students a day so it isn’t likely that they know all their students. Yet I was surprised when this teacher didn’t know who my son was or that he had diabetes. I was assured by the counselor that they all received medical information about my son. We haven’t written an official 504 yet but I have shared information with each of his teachers via email. Still this teacher had no idea who my son was. I explained he had diabetes and the activities in the class could cause him to experience a low blood sugar. The teacher assured me that he keeps glucose tabs for all his students with diabetes. Then he said this…

“I had this one student that had it really bad. Had to wear an insulin pump and everything.”

Heart sank. Blood boiled. Tried not to make eye contact. Tried not to grab the very large man by the shirt and shake the crap outta him while screaming – “Insulin doesn’t mean BAD”

The bell rang and I was going to be late getting to the next class so I simply invited him to the 504 meeting on the 24th. He said he was required to be at the meeting (he did this with a grimace).

I get that the general public doesn’t understand diabetes. I didn’t understand it before Sugarboy was diagnosed. I get that main stream media doesn’t do a great job of helping others understand diabetes. I see magazines at the check out that say “Reverse your diabetes now”, “Avoid insulin if you’re diabetic”, “Diabetic friendly recipes”, etc. – it saddens me that there is so much misinformation shared in commercials, news stories, sitcoms, and on the internet.

It is why I write on this blog, why I share other blogs, why I normally would stop and school people who have been mislead. It’s why I carry a touch to enlighten people or beat them with it.

If you have a child with diabetes and are unsure if your child’s teacher understands diabetes consider copying the following and sharing it with your child’s teachers. The notes I sent obviously included my children’s names. Changed here for safety and put in Bold to help identify where you would insert your child’s name.

I sent this to all of my kids teachers the first day of school. For Sweetstuff and Sugarboy I said that their current 504 plans are in effect until a new plan is written. For Middles I explained that a 504 meeting would be held soon.

What is (or will be) in the 504.

  • Unrestricted access to restrooms without penalty or undue attention
  • Unrestricted access to water (she will have a water bottle with her at all times)
  • Unrestricted access to fast acting carbohydrates to treat low blood sugars (she will carry fast carbs with her)
  • Unrestricted access to her glucometer and diabetes supplies (she will have these on her at all times)
  • The authority to check her blood sugar in class at regular scheduled times and as necessary if she feels high/low.
  • Authority to use her cell phone to text me her blood sugar numbers and ask for advice as to how to treat a low or high blood sugar. She has been instructed to keep her phone on silent at all times and not to use her phone for any purpose other than to text me.
  • Guidelines related to when Sweetstuff can participate in an exam. Meaning if her blood sugars are too high/low prior to the start of an exam she will have to wait to take the exam without penalty. We make every effort to ensure Sweetstuff is within range at all times but diabetes doesn’t always play fair. High and Low blood sugars cause her brain to be less efficient. Highs can make her thought process cloudy and cause severe headaches; low blood sugars would be similar to being intoxicated.
  • Sweetstuff will not be allowed to participate in PE if her blood sugars are in an unsafe range – extreme physical activity can lower blood sugars rapidly so his blood sugar needs to be at a safe level prior to PE to avoid severe lows which can result in seizures and unconsciousness. Extreme high blood sugars often cause the body to produce ketones. Ketones combined with extreme physical activity can result in swelling in the brain. I am sharing this with all teachers because occasionally teachers of all subjects are very creative and could include physical activities to teach a lesson so it is important to be aware of Sweetstuff’s need to check blood sugars prior to participating.
  • If Sweetstuff is experiencing a severe low blood sugar (<70) she should not be left alone. If her blood sugar is above 60 but below 70 she can be escorted to the health office to treat the low blood sugar. If below 60 she will need to treat the low blood sugar with fast carbs before leaving the classroom and being escorted to the health office.
  • I will attend field trips or if I am unavailable the school will send the district nurse or other qualified staff to assist with insulin dosage. I am happy to act as a chaperone during the field trips if needed. It would be very helpful to know the possible dates of field trips so I can plan to be available.
  • There will be (likely are already due to other diabetics in the school) staff trained on emergency glucagon. It is similar to an epi-pen but for diabetics experiencing a severe low blood sugar who have already begun to have seizures or have fallen unconscious.

 Forgive me if you are familiar with Type 1 diabetes but I am sharing a few basic facts in case you would like to understand more about Type 1 Diabetes. (Included this note as an FYI for all teachers)

  • Type 1 diabetes is an autoimmune disease. The body’s own immune system decides to attack the insulin producing cells in the pancreas leaving people with Type 1 diabetes insulin dependent for life.
  • People with Type 1 diabetes did not cause it to happen by eating poorly or failing to exercise. (I am not suggesting that other types of diabetes are caused by poor diet or inactivity) 
  • There is no cure for diabetes. Artificial insulin allows people with Type 1 diabetes to stay alive but it is not a cure.
  • People with Type 1 diabetes check their blood sugar by poking their finger to obtain a drop of blood up to 14 times a day.
  • People with Type 1 diabetes must take insulin via syringes or an insulin pump. Those wearing an insulin pump must wear it 24/7.
  • A person with Type 1 diabetes can eat everything everyone else eats – although it doesn’t mean they should any more than it means those without diabetes should be eating unhealthy foods.
  • There are only two things a person with Type 1 diabetes cannot do (at least in the US) – fly a commercial jet and join the US military. Currently there are celebrities, professional athletes, Olympians, Elected Officials, Fire fighters, police officers, and other professionals in all careers fields that live well and find great success despite having Type 1 diabetes.
  • Diabetes is a life threatening disease every day. People with diabetes make dozens of decisions each day regarding food, exercise, and daily chores to effectively manage diabetes.
  • Kids with diabetes, especially in the middle school and high school years can be ashamed or embarrassed by their diabetes. Few kids like to be viewed as ‘different’ and poking oneself multiple times a day, wearing an insulin pump, or injecting insulin via a syringe shines a bright light on kids with diabetes. Developing a management plan that the student is comfortable with is a key component to allowing the student to effectively manage his/her diabetes.

 Symptoms of Low blood sugars

  • Pale skin
  • Sunken eyes
  • Dizzy
  • Shaking
  • Disoriented
  • Extreme hunger
  • Sweating outside of a extreme activity

 Symptoms of High Blood Sugars

  • Extreme thirst
  • Frequent Urination
  • Hunger
  • Headache
  • Body aches
  • Poor/blurred vision
  • Increased frustration in daily tasks

If We Have To Strip – Let’s Be Safe.

Earlier this summer Bennet author of YDMV  began a campaign to hold manufacturers of glucose test strips and meters accountable. The campaign StripSafely has reached far and wide. Last Wednesday there was a ‘Tweet In‘ members of the Diabetes Online Community and beyond sent thousands of tweets to members of congress and the FDA. (If you missed the Tweet In – don’t worry you can still send tweets! Seriously – right now, you can send them now. The link above already has the tweet ready – just click the members of congress and send the tweet. Go.)

Today the campaign continues with a special edition of Diabetes Art Day focusing on test strip accuracy via Lee Ann at The Butter Compartment

stripphotoIf you have not written to members of congress yet, now is a good time. Emails are great too. Or with the kids all back at school if you find yourself alone at home you could even pick up the phone and call your representatives. there is a letter all prepared for you HERE or you can write your own.

If you are not familiar with why test strip accuracy is important you can read about it HERE.

Thanks for stopping in. Please tweet, write, email, call or use smoke signals to bring attention to the StripSafely campaign. Lives depend on it.