Expect The Unexpected

That title is an over used quote and cliché.

I’m sick so hopefully you’ll give me a little leeway because creativity is not on the table this morning.

Seriously the mother of all colds hit me hard Saturday morning and hasn’t let up.

Today is Day 1 of diabetes blog week.

Diabetes blog week is a week-long blogging event with daily prompts to get folks sharing their thoughts on a particular issue or experience. For many diabetes blog week is a set of jumper cables on blogs (bloggers) who have taken a much longer than intended hiatus from blogging. Or maybe that’s just me.

Today’s prompt copied from the Diabetes Blog Week FB page:

It’s Day 1 of Diabetes Blog Week!! Today we’re talking about Diabetes and The Unexpected.
Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random. What are your best tips for being prepared when the unexpected happens? Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?

The obvious answer is to always be prepared with extra supplies, extra meter in the car, extra carbs to treat lows, extra infusion sets in case one fails while out or gets ripped off on asshole doorknobs, and extra insulin if a traveling – like I mean 2x what one might expect to use because tile floors at condos near the beach are not forgiving to glass bottles that roll to the floor.

That’s the nuts and bolts of being prepared for the unexpected in regards to supplies, but I think there is a mental preparedness that needs to be addressed.

Diabetes is an asshat and even when one is doing everything “right” (checking blood sugars, bolusing for food, eating healthy, and exercising) blood sugars can spontaneously misbehave because Venus is in retrograde and a butterfly fluttered his damn wings in Uganda. These spontaneous highs and lows in blood sugars and the relentless care needed to stay alive and healthy can take a mental toll on a pwd. (A quick side note in case you are new to my blog. I have a fully functioning pancreas. My brain, not always so. I am a mom of 3 teens with T1D so the thoughts and experiences I share come from a place of observation and discussion regarding my kids and 10 years of living with others who live with diabetes.)

Everything in one’s life could be ideal (aside from having an organ that doesn’t do what its supposed to do) but one may still find that anxiety, frustrations, and depression can sneak in a sucker punch. Those are the days that it is harder to be prepared for.

If you are reading this you are likely already connected to the Diabetes Online community and you recognize the value of a community of people who understand ‘me too’. Even being connected some of us (caregivers of pwd/cwd included) can be too proud or too stoic to admit that we are struggling. There can be a fear of a stigma in admitting we are depressed, overwhelmed, or anxious.

I feel like the copious amounts of cold medication has caused me to wander from the topic. Stay with me.

When my youngest was diagnosed in 2007 I was not using any social media. I was not really connected to anyone else who had children with diabetes. I mostly ran into others who had an aunt or grandparent that lost a leg or died because of diabetes. Those who share stories like that don’t mean to scare us, they are simply trying to empathize but don’t know how. I spent two years without any real support or connections, although once each of those years I attended the Children With Diabetes Friends For Life conference in Orlando. An amazing experience, but still only once a year. Then my daughter was diagnosed and both kids attended diabetes camp. That allowed me to meet some local families and have some support. Still I spent another 3 years alone and afraid to admit that I was struggling physically and mentally while caring for my kids. In 2012 I found the Diabetes Online Community. That was a turning point for me. I found others who truly understood what it is to be a parent of a cwd but even better I found pwd who gave me a glimpse into what it was like to live with diabetes so I could be a better parent to my cwd.

Instead of just giving me kudos and calling me a super mom, people online gave me permission to be frustrated and sad. That was unexpected. It is great to be told what a wonderful mom I was, but it was better to be told I didn’t need to be perfect. It was great to be told how brave and strong my kids were, but it was better to be told that they were going to struggle and that it was ok.

I seriously have a foggy brain with this cold but I hope I’ve shared my thoughts in a somewhat cohesive manner.

  • Have extra supplies because you never know when your friends dog will jump on you and rip your site off.
  • Recognize that even when everything is coming up roses, anxiety and/or depression can take you for a ride, asking for help or simply sharing in the DOC is encouraged because their is no greater power than “me too’.

I’d give my life if it meant my kids didn’t have diabetes. Since that isn’t an option I have to recognize what diabetes has brought into our lives even if it means taking the good with the bad.

  • Friendship
  • Resilience
  • Strength
  • Empathy
  • Compassion
  • Courage

 

 

 

 

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.

 

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.

 

Strip Safely

Avoid applying glitter to your nether regions. 

SS-LOGO-STACK

Ok actually Strip Safely is not a joking matter.

It is about holding Glucose Meter manufacturers and Test strip manufacturers accountable.

People with diabetes and the parents of children with diabetes rely on glucose meters and test strips to collect blood droplets multiple times a day. The numbers collected from the meters are used to dose insulin and treat low blood sugars.

A person with diabetes must take daily injections of insulin (or infuse the insulin via an insulin pump) to stay alive and healthy. Without insulin everyone diagnosed with Type 1 diabetes and even other types would die. That same fabulous clear liquid (that smells of band aids) can also kill a person. The balancing act of administering just the right amount of insulin at the right time is something all people with diabetes (or parents of kids with diabetes) must perfect – and the amounts of insulin and timing change throughout the day, the week, the month, and a persons life (really perfection is a myth and one day a certain amount of insulin for a specific meal will be spot on – the next day the same amount for the same meal will leave us scratching our heads with the proverbial WTF.)

High-wire aerialists use a balancing pole to assist them in negotiating a thin wire stretched across two elevated points.

People with diabetes use glucose meters and test strips to navigate the thin wire that is diabetes.

So what happens if the accuracy of our meters/test strips are compromised? Well imagine what would happen to a high-wire aerialist if the weight of his/her balancing pole could vary +/- 20% at any given moment during his/her performance.

There is more to say. More to explain.

I couldn’t possibly do as well as Bennet – author/owner of YDMV, who started the StripSafely campaign. So without further delay please visit  StripSafely. Take the Quiz (what you didn’t know there would be a test?) Read the issues page. Join the campaign. Write some letters. Give a listen to the DSMA podcast to understand more. In addition to signing the petition and sharing the campaign consider donating to the cause – you’ll even get a pin.

 

 

Grumpy Cat Says – No.

Day 24 Health Activist Writers Month Challenge

Today I was supposed to create a Pinterest board and share it for wordless Wednesday. Instead I drew a picture. I drew the picture because I am still unclear about all the laws pertaining to using other people’s photos without permission. I don’t happen to know Tardar Sauce’s “Grumpy Cat” family so I drew him instead. (I do not claim to be an artist and trust me when I say no one has ever accused me of being an artist)

gphoto

 

There are folks in the diabetes community (mainly moms of children with diabetes) that are proposing a name change for diabetes. It is their belief that changing what we call diabetes will end confusion and stereotypes. I don’t believe it will. For the past couple weeks I have been drafting a post about the name change petition/proposal. It was gonna be great, it was even going to quote Shakespeare. The thing is some of the best and brightest in the diabetes community beat me to the Shakespeare quote and they wrote awesome posts and said everything and more that I would have said. I can’t say it better than them or better than Grumpy cat.

Please check out these posts by fellow diabetes bloggers to learn more about the proposed name change.

Bennet at YDMV

C at theperfectd

Scott at Strangely Diabetic

Bob at T Minus Two

Lee Ann at The Butter Compartment

HERE is short video with Manny Hernandez the founder of TuDiabetes  about a different petition – a petition to unite us. This is the one I signed but you should make your own choice.

Here is the Petition to change the names of diabetes. I just want to say I respect these moms. I understand where they are coming from and what they are trying to do. I just don’t agree with them.

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.

 

Are you a Solostar

I received an email from a casting director in New York that has been hired to find real people living with Type 2 diabetes who currently use Lantus as part of their daily diabetes management.

I have had the great pleasure of getting to know many people in the Diabetes Online community living well with Type 2 diabetes. Perhaps some of you would like an opportunity to put a real face with one of the medicines that allow PWD to live well with diabetes.

Please check out the following information – time is short I believe the deadline is tomorrow (Monday Dec 10th).

CASTING FOR REAL PEOPLE LIVING WITH TYPE II DIABETES **CURRENTLY USING LANTUS**
FOR A “LANTUS SOLOSTAR” PHOTO SHOOT

WHAT WE ARE LOOKING FOR:

Men & Women, Ages 40 – 55, who are living with Type II Diabetes

and currently using Lantus. IDEALLY, Lantus Solostar Pen

(but open to those using insulin syringe) All shapes, sizes and ethnicities welcome! SUBMISSION INSTRUCTIONS

• EMAIL: 3 or more pictures of yourself to Kaia@picturefarmpro.com.
full length & close up – They do NOT need to be professional – candids are fine.

• TELL US: Do you currently use Lantus for your Type II Diabetes? Do you use the Solostar Pen, or insulin syringe, or other?

• BE SURE TO INCLUDE: Your full name, age, where you live, and contact email/phone EMAIL SUBMISSION DEADLINE:

Monday, Dec. 10th, 2012

MORE INFO: (If selected)

SHOOT DATE: Thursday, December 20, 2012 LOCATION: New York City

COMPENSATION:

$4800.00

*we will cover your travel and accommodations if you live outside of NY*

PHOTOGRAPHER: Jake Chessum – http://www.jakechessum.com/ PRODUCTION COMPANY: Picture Farm http://picturefarmpro.com/

page1image11776 page1image11936 page1image12096 page1image12256 page1image12416

Questions? Contact Kaia via Email @ Kaia@picturefarmpro.com or phone: 718.218.8001