Not A Hero

Please don’t call me a hero.

Yes I have 3 children with diabetes.

That doesn’t make me a hero. It makes me a mom with extra duties.

I recently joined two groups on Facebook. One for users of Dexcom G5, the other for users of Tandem insulin pumps.

When I’ve commented on a couple different posts in both groups I had mentioned that I have 3 cwd. I didn’t shout it out like “Hey I have 3 kids with diabetes”. It was just something that came up as I tried to offer advice or support regarding sensor placement, or pump choices, or how diabetes can go all pear-shaped for seemingly no reason.

In response to learning I have 3 kids with diabetes a few kind folks have called me a “hero”.

It makes me truly uncomfortable to be called a hero. I don’t often know how to respond.

Often I just say – ‘thank you’, and maybe add in how ‘everyone has something’.

My kids aren’t heroes either, at least not simply because they have diabetes.

They are warriors sometimes. They are also tired and overwhelmed sometimes. So am I.

Having a disability or a chronic disease does not make a hero.

Doing something to better the lives of others, possibly related to ones own disabilities or chronic diseases can justify the hero title but simply having something does not make a hero.

Aside from not truly qualifying as a hero simply for existing, being called a hero unjustly can put an awful lot of pressure on people.

There are real heroes in our community.

Men and women who make phone calls to congress to improve access to health care. Heroes.

Men, women, and children who invest time and money in raising awareness and funds to cure diabetes. Heroes.

Volunteers at diabetes camps, conferences, and organizations that provide assistance and support to those with diabetes. Heroes.

Outside our community there are others who justly deserve the hero title.

Organ donors. Heroes.

Blood donors. Heroes.

People who rush in to tragic events to assist others without regard for their own safety. Heroes.

Politicians who speak outside their party to oppose proposed laws that would hurt the masses. Heroes.

I am a mom who happens to be raising 3 kids who happen to have diabetes. I am not the only parent of multiples (more than one child with diabetes). There are many of us. Granted multiples is still not the norm and membership to our club is costly.

Thank you to everyone who has learned I have multiple children with diabetes and empathized so much as to think of me, even briefly, as a hero. I understand you are not suggesting I don a cape. You are simply acknowledging the amount of work and sacrifice raising multiple kids with diabetes is. I thank you for that acknowledgement.

The jury is still out on how well I’ve raised my kids. We do our best with what we have to work with.

I personally think my kids are rockstars even when their words and actions (or lack of actions) make me want to bang my head on the wall.

 

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.

Wherever You Go, There You Are

Hi my name is Tina and I have been a Dmom for over 7 years. My last cry was Saturday.

Diabetes meet-ups are wonderful. While I have never been part of a 12 step program I have seen meetings in movies. I imagine those who attend such meetings feel a similar longing for understanding and acceptance and hopefully find a sense of calm in attending a meeting.

Monday evening I (along with some other fabulous parents of children with diabetes) arranged a meet-up for kids attending a diabetes camp this July. The turn out was good, about a dozen families came with their cwd and siblings. The kids played in the arcade as parents visited. It was great when the director of the camp and a counselor came to say hi and answer questions – totally unexpected as this was an unofficial meet-up and not camp sponsored. Having camp staff available to answer questions for first time parents was a real treat. The kids met other kids attending camp and that will hopefully make camp a little less intimidating day one.

A couple of hours after the meet-up I met up with two friends. One of whom also attended the camp meet-up. She isn’t as accustomed to diabetes meet-ups so when she said it kind of felt like going into a support group I could completely empathize. I remember all too well those first few diabetes meet-ups I attended and in truth they do often begin with what sounds like a support group introduction.

Name, age of cwd, and how long in the diabetes club.

It’s common for the nuts and bolts of diabetes to be discussed – what kind of insulin pump, CGMs, 504 accommodations, even the dreaded A1C (hopefully with no judgments from anyone at the meeting). Then if given the opportunity the conversations dip into the emotional side of diabetes; fears, perceived failures, difficult family and friends, hormonal teens, and the roller coaster crazy that is life with diabetes.

This last meet-up was short – two hours total. I don’t know that any of those in attendance got to the emotional side. It wasn’t really the right venue for the emotional stuff, it was loud and chaotic but hopefully also a little informative and really was for the kids more than the parents and I’m fairly certain connections were made. I know Sugarboy met another 5th grade boy who was painfully shy with adults but living it up with my boy and another 5th grade girl. They have hopes of being in the same cabin at camp.

Many families with diabetes never attend a diabetes camp, don’t attend conferences and don’t participate in organized activities. They get their diagnosis and continue on with life with diabetes riding in the side car. There is nothing wrong with this lifestyle. I have many adult friends with diabetes where this was the norm when they were diagnosed 20, 30, 40 years ago. I have these friends because at some point they found their way to the diabetes online community. They found other PWD online. They connected, and some, for the first time after 20 or more years with diabetes realized they really were not alone; there are others around that fight highs and lows, ignorance and even discrimination. As well as others that worry about complications or deal with complications. There is something so powerful in finding out you’re not alone. It is empowering. At the same time knowing you’re not alone doesn’t mean you have to be as involved in the diabetes world as others.

As a parent of three children with diabetes my hope for my kids is they find a place they are most comfortable. Maybe that place will be up front and center in the diabetes world. Maybe that place will be two different worlds – one with friends and co-workers with fully functional pancreases and another with other PWD. Or maybe that place will be one where diabetes rides in a side car and isn’t given any more attention than necessary to stay alive and thrive. Every PWD and CWD is different and just as insulin doses vary so does the desire for other people with diabetes in their lives.

My hope for all my diabetes family, which includes all people and kids with diabetes regardless of type of diabetes is that they find a sense of calm and belonging in their lives with as much or as little diabetes as they are comfortable with.

If you are not currently connected to a diabetes community but would like to connect in others IRL (in real life) or online I recommend the following:

  • Contact your local JDRF office and ask if they are aware of any meet-ups or groups in the area
  • Ask your child’s endo about local groups
  • On Twitter search the hastags: #diabetes #DOC #DSMA
  • Check out the Children With Diabetes forums – there are many different forums basically anything you can think of regarding all things diabetes has a forum
  • Check out TuDiabetes – by the Diabetes Hands Foundation – again regardless of type there is something for everyone
  • Consider attending conferences in your area or beyond. There are too many for me to list so I suggest doing a search for ‘diabetes conferences in (your area – list closest major cities)’  My favorite conference is in Orlando each July. It is the Children with Diabetes Friends for Life conference – although don’t let the name fool you – they have an adult with diabetes track as well

(Just a side note – while most everyone in the online community is there to support and be supported there are a few that trickle in that either don’t actually have diabetes or any connection to it that simply like to troll. Thus when entering the online community be weary and take the advice you give your kids when online – don’t share too much personal information like address, full names of family members, etc.)

‘Wherever you go, there you are.’ Is a quote and book by Jon Kabat-Zinn. Jon is a professor of medicine and teaches mindfulness, meditation and stress reduction.

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.

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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.

There Are No Strangers In The D World

Monday I discovered my little dog had a terrible infection on one of his rear legs. Required emergency surgery to remove dead and infected tissue.

On Tuesday I needed to have Sugarboy in Palo Alto to start the second part of the study he is participating in.

On Wednesday the kids and I were leaving NorCal to travel to the Seattle area to house shop.

Meanwhile I was frantically finishing up cleaning and organizing my home so it could be listed for sale Wednesday evening.

I started packing for our trip Wednesday at 4:30pm – flight was scheduled for 9pm which meant leaving the house by 5:30pm because I’d be driving to SFO during rush hour.

3 pair of pants for each kid, 4 shirts, 4 underwear, 4 pairs of socks – check

toothbrush, toothpaste for each kid – check

jackets – check

electronics (DS’s, ipad, phones, chargers, laptop) – check

clothes for me – check (not really I forgot to pack pants)

Seems all in order right? oh wait I forgot about the elephant.

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Insulin – check

3 different pump cartridges and two different infusion sets (3 kids on 3 different pumps) – check

CGM sensors (part of study for Sugarboy) – check

Computer that is used with study – check

Glucagon – check

Lantus and syringes – (just in case) – check

Extra pump (just in case) – check

ketone strips and meter (also part of study) – check

Ketone stix (part of study and just in case) – check

Zofran (just in case) – check

Test strips for two different meters – NOPE

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I only packed contour strips – didn’t pack OneTouch Ultra strips for Middles.

Sweetstuff and Sugarboy are both using Contour Next meters.

Sugarboy can’t share his meter since it is for the study. Sweetstuff wasn’t keen on sharing.

Middles was down to 5 strips by 9am today. 3 days to go before we are home. Shit.

Here is where AWESOME happens.

There is a Facebook group I was invited to join for the Seattle area.

Much like many other local groups around the country. Parents of CWD.

I posted in the group that I was visiting and needed test strips around 9am this morning.

By 9:30 I had 3 responses. “Sure I have strips, where would you like to meet up?”

Please note – I’ve never met any of the parents IRL from this group.

I’ve only been part of the group since early November.

Yet these parents answered the call. A stranger in the diabetes world is no stranger at all is what I have learned.

I don’t want to share the name of the group or the folks that responded because the group is private and honestly I’m not even “friends” with them (yet) on Facebook but still in case any of them find their way to my humble slice of the blogosphere I’d like to give a huge shout-out and express my sincerest gratitude for their generosity.

The diabetes online community is a magical place and stretches further than twitter, blogs,  Facebook and Instagram. It embraces us all with outstretched arms and touches our hearts. IMHO.

Thank you again G and everyone that responded so quickly to my post. I am so blessed in this area already and I haven’t even moved here yet.

Oh and while I am tossing out a shout-out Id like to include three others.

One goes to a mom of a CWD that I was introduced to via email after contacting the Seattle are JDRF. She is on the board and we have exchanged a number of emails, chatted on the phone, Facebook messages and texts. She has been instrumental in helping me understand the area. Sadly there were no homes that met our needs and budget real close by to this new friend but I’m sure we will meet up soon and I’ll be seeing her at JDRF functions.

Another local parent of a CWD has also exchanged been helping me learn the area and shared her experiences with diabetes in Seattle. Again sadly no homes near her but certainly look forward to meeting up and getting to know this wonderful Dmom.

Lastly – I “met” (online via the Facebook group) another Dmom in the area I hope to buy a home. I had again posted in the group a question about a particular city and asked if anyone was around. She responded and has shared wonderful information about the area we hope to buy a home. She has a daughter with T1 Sugarboy’s age and even works at the school the kids would attend.

This post isn’t witty or funny or exceptionally intelligent in general but for me it was a very blessed day – a reminder that no matter where we live my kids and I will never be alone.

Thank you to all the Dfamilies that have taken the time to welcome us to the area.

 

Staying Emotionally Safe

I don’t share my kids real names here or on Twitter or on Instagram.

I want to keep my kids safe. Not just physically safe from predators and the like but also emotionally safe and preferably not searchable via web searches.

I’m not alone. Many parent bloggers and PWD who blog don’t share their kids names. Had I not been an avid diabetes blog reader before blogging myself I might have not considered using pseudonyms for my kids. It is just something that other bloggers did and it made sense.

Some bloggers do use their kids names and I’m not judging – promise if I wasn’t a bit paranoid I wouldn’t have thought anything of it. I’m a bit of a nervous ninny and the internet is a scary place. Things get shared so quickly. In fact, recently I have seen dozens of posts on Facebook of teachers and parents holding signs that ask people to share so they (the parents and teachers) can illustrate how quickly photos can go viral. Now some of those photos are likely put out by asses that participate in “like farming” – basically they post a photo that is bound to get a bazillion likes or shares and then sell the page to the highest bidder. Seriously this is a thing. The ‘like farmers’ use photos that say things like “like this if you love Jesus” or “Like if you want me to kick cancer’s butt” or sometimes just cute puppies – who doesn’t like adorable puppies. Sorry I digress – but you can read more about ‘like farming’ here. I’ll move on now.

In the past I would accept Facebook friend requests like I’d except a free Reese’s candy bar. Hell yea I want a Reese’s.

But – I learned a valuable lesson about a year ago when it was discovered that a person without any real diabetes connection was fabricating stories and infiltrating our happy little diabetes community. It wasn’t the first time and won’t be the last that someone “fakes” it. Many times these fakers are suffering from a mental illness (I forget the name). They simply want/need attention. Other times the fakers are more dangerous – they will earn our trust and our empathy and then they will fabricate some horrific event and in the end ask for help in the form of donations. Evil people.

With this being said I tread carefully and where there was once free trust, now it needs to be earned. I no longer accept friend requests from strangers on my personal Facebook, people I haven’t met IRL (in real life).

However I do have a fan page for Stick With It Sugar on Facebook and you can like it here.

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I promise I’m not selling anything, buying anything, or processing anything – I’m just saying stuff and sharing stuff better said.

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http://www.youtube.com/watch?v=VEgu7jdc_fs

Like John I haven’t been knocked down yet so I’m still just kick boxing my way through diabetes.

So how does Staying Emotionally Safe fit into all of this? Well in addition to keeping my kids safe from predators and google I need to keep myself safe from those that perhaps unintentionally will take advantage of my willingness to communicate, to help, and to listen.

Diabetes takes a huge toll on those with it and those that care for others with it.

Diabetes seeps into nearly every aspect of our lives and it is easy to fall into a diabetes centric world. I don’t want to live in that world. I don’t want my kids to live in that world.

I share A LOT about diabetes on my Facebook, not just the SWIS page. Some might suggest I have “too much diabetes” in my life. Ya Think?

BUT the difference between sharing a conversation on Facebook, blog comments and twitter interactions is I get to choose the when and how.

That isn’t true if I share my home address, phone number, and personal email. If I share those means of communication I am leaving the door open to diabetes conversations anytime and anywhere. And so –  I don’t share them, not unless I have become close friends regarding things other than diabetes like Reese’s and funny shit pets do.

I have no medical training. I don’t have any grief or stress management training. I am not qualified or comfortable to provide counseling or medical advice. Just FYI.

As a person without diabetes I can choose at times to close the door on diabetes. I can step away and enjoy a meal with friends and not count carbs. I can text friends and chat on the phone without using the words ‘diabetes, insulin, depression, carbs, etc.  I hope as PWD my kids will find ways to close the door too and only allow diabetes in long enough to do the do diligence then kick its ass out for extended periods of time.

My point – please do not be offended if I don’t accept your friend request on FB or answer your email requesting I call you or provide you my mailing address. It isn’t personal. Honestly. It’s me doing what I can to stay safe emotionally and physically and keep my kids safe too. I want to maintain some semblance of control regarding when I let diabetes conversations into my life – Lord knows my kids and I get very little control otherwise.

 

 

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.

 

Unexpected Heroes

This is not the green bracelet post I promised. Still working on that.

Each year at the Children With Diabetes Friends For Life conference individuals are recognized and awarded a plaque identifying them as Unexpected Heroes.

As a conference attendee I am not privy to why or how individuals are chosen. I have great faith in the CWD organization and I am certain that deciding who to recognize is a difficult process – I mean so many individuals put so much into making FFL an amazing experience for all of us.

What I want to do is recognize a few individuals that are heroes in my book. I can’t present them with a beautiful plaque or standing ovation but I can offer them my respect and appreciation for what they do and who they are.

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An The Unexpected Hero Awards go to….

 

First up – Richard Vaughn

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Richard’s the tall guy in the sweater. 😉

Richard has been living well with diabetes for over 67 years. That is 60 years longer than my youngest son. He is the author of ’64 Years of Diabetes Health’ and author of his blog Richard’s Rambling Review. Sadly I was never able to sit and chat with Richard – not that I didn’t try to find him during meals, I would have happily broke bread with him. I did have the opportunity to introduce myself briefly, shake his had and pose for a photo with some other wonderful friends.

I saw Richard from a far a number of times during the conference. He walks with great confidence but is also very humble and certainly looks the part of a college professor (now retired),  Hands clasp behind his back and his eyes scanning the world with constant curiosity.

When I read Richard’s words it gives me hope, and strength. I don’t ever imagine my kids with diabetes doing less than all they dream to do but still knowing Richard has done so much and lives so well is inspirational. I doubt that he ever set out to be such an inspiration which makes what he has done, is doing and who he is all the more meaningful. I hope when Richard returns to Friends For Life he will host a break-out session and I will be able to attend to hear him speak.

Next up – Moira Stanford

Sadly I have no pictures of Moira from the conference. Thus you get to enjoy this awesome one of her on skies.

Sadly I have no pictures of Moira from the conference. Thus you get to enjoy this awesome one of her on skis.

Moira is a mom of an adult with type 1 diabetes. Of course her daughter wasn’t an adult when she was diagnosed with Type 1. Moira shares her struggles and strengths in her book Raising Teens with Diabetes just recently published and already a 5 star book on Amazon. I was able to pick up a copy of her book back on June 25th. Sadly I haven’t had a whole lot of time to read it just yet (house guest and traveling ate up all my time between June 25th and now but it is at the top of my nightstand book collection already with pages dog-eared.) Here is one of the glowing reviews Moira’s book recently received. She is also the author of the blog Despite Diabetes. I’ve been reading Moira’s blog for sometime and she is and has been a real inspiration – leaving me with a desire to be as good as she is and was while raising her daughter.

Moira spoke at the opening breakfast of the conference. Her words of wisdom, strength and support resonate with me. Being part of the “yes” club is my highest priority with my kids. Allowing them – encouraging them to do everything they want to do and not allowing diabetes to deter us – them.  I’ve not always been successful with being part of the “Yes” club. My biggest challenge is sleep-overs but that was gonna be a challenge without diabetes based on my husbands up-bringing and the idea that kids should always sleep at home or only with family. Moira’s message about the ‘yes’ club wasn’t only about encouraging our kids. It spoke to us Dmoms as well. Despite diabetes Moira and her daughter have continued to do what they love. Moira didn’t hang up her skis (HUGE fan of downhill skiing and quite the acrobat on skis) or allow her career to be derailed and still her daughter is successful, healthy and a strong person and advocate – perhaps more so because of Moira’s strength and perseverance as a guide. I see that lesson as don’t be a bad example for our kids – don’t give up what we love because of diabetes – we wouldn’t want them to, so why should we?

Thank you Moira for your words, your inspiration and your friendship. It is all as priceless as you.

Last up but not at all the least – Meri of Our Diabetic Life

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I doubt I need to tell anyone but Meri is the beautiful blond on the left. Also pictured and a hero is Wendy of Candy Hearts in center.

Meri is a hero to many for her words on Our Diabetic Life, for her tireless support and her limitless love. Meri was asked to speak at the opening breakfast. She was asked to share her love for a man near and dear to the diabetes community. Meri loves with her whole heart, her entire soul – if love is a person it walks the earth as Meri. Meri is also no stranger to loss and hearing her share her loss with the entire community as we all mourn the loss of Richard Rubin, an extraordinary member of the diabetes community, was a humbling experience. Meri’s words and story make me want to love harder, love louder, love more unconditionally, treasure the moments I have with my family and friends and say “Thank you for another day”.

If you read my silly ol’blog you undoubtedly already read Meri’s. But in case you missed it, here is Meri’s post about the time she made us all love more (she doesn’t call it that – but that’s what it is to me).

Thank you Meri, Moira and Richard. You all make me want to be a better person.

You are my Heroes.

 

Unexpected Outcomes

Anxiety is an unpleasant state of inner turmoil and apprehension, often accompanied by nervous behavior, such as pacing back and forth, somatic complaints and rumination. It is the subjectively unpleasant feelings of dread over something unlikely to happen, such as the feeling of imminent death. Anxiety is feeling unrealistic fear, worry, and uneasiness, usually generalized and unfocused. It is often accompanied by restlessness, fatigue, problems in concentration, and muscular tension. Anxiety is not considered to be a normal reaction to a perceived stressors although many feel it occasionally. When anxiety becomes overwhelming and distressing to the sufferer, it may fall under the psychiatric diagnosis of anxiety disorder. Anxiety is not the same as fear. Fear is evoked by a realistic danger and is an appropriate response to a perceived threat, while anxiety is worry or overreaction to a situation that is only subjectively seen as menacing.

The above is from Wiki

I have been on a loop. Feel good. Feel bad. Feel good. Feel bad.

I think most people are loopy but maybe some are in longer loop patterns and there is certainly more good than bad.

I started this post and got to that point ^^^ before I saved draft and walked away. I stopped writing because I was in the ‘bad’ part of the loop and I realized I didn’t want to write about anxiety when I was in that place.

Now that I am in the ‘good’ part of the loop I wanted to revisit writing about anxiety. Especially after attending the Children With Diabetes FFL conference in Orlando. I attended a session about Stress Management while there. It was way too short (the break-out session and the conference) but in that little bit of time in the session I learned something amazing. It was Dr. Bob who said it and I already shared his words in my last post but to recap he said:

“suffering comes from the attachment of an outcome, Remove the expectations and that will limit suffering”

Years ago a friend said something similar, she said it when she was experiencing the ‘bad’ part of her own loop. She said:

“expect nothing and never be disappointed.”

The two statements are similar but also very different.

My friend gave me the advice while she was experiencing high levels of stress, anxiety and disappointment. Thus her statement seems more negative, almost bitter. Through the years while I was experiencing stress or disappointment I would remember the advice and it would not help. It would make me more disappointed, angry, frustrated, and sad.

Dr. Bob’s words were not said with bitterness and are meant more to be a tool or plan – setting readers/listeners up for success. His words also do not promise “no disappointment” they suggest that removing the expectations can limit suffering.

Random picture to break up text - yet on topic.

Random picture to break up text – yet on topic.

I was concerned and experiencing anxiety prior to our trip to Friends For Life. My anxiety was in regards to how my dear husband would handle my interactions with all my DOC friends. I knew he (my husband) gave up his idea of a family vacation to take our family to FFL. He actually asked the kids which they would prefer – a trip to Hawaii or FFL/Harry Potter World. They all said FFL and Harry Potter World – although I think the boys were voting for HPW more than FFL. My husband was out voted and we planned our trip to the conference.

The night before our trip I was experiencing a huge amount of anxiety. Chad wanted to know the schedule. When was “family time”?

I could feel my heart racing. Was the trip going to be a bust because I was going to be disappointed that I didn’t get to hang with my DOC friends or would he be disappointed that I spent too much time with my DOC friends.

He sensed my anxiety and basically wanted me to clarify my expectations of him. I said I haven’t set any expectations. He could do what he wanted and felt most comfortable doing. I did say that I would love for him to meet and get to know some of my DOC friends but I would not require it of him.

All in all the week went great. We had family time and I had lots of DOC time. We spent a good deal of time Saturday together with one of my favorite DOC friends and the two of them hit it off and chatted amongst themselves.

I think it can be difficult for people not involved with the DOC to understand how important it is to those of us who are a part of it. I am grateful to my dear husband for recognizing how important it was for me to have my time with online friends. I am glad we talked about our expectations ahead of time. I am also glad that I didn’t focus too much energy imagining what could go wrong or setting myself (and those I love) up for failure by setting unfair expectations and thus I limited my ‘suffering’ or disappointment.

Hope I can continue this in all aspects of my life and maybe anxiety wont be such a monster in my life.

A moment of Zen

A moment of Zen

 

 

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.

My Village Spans The Entire Globe

Day 11 Health Activist Writers Month Challenge

Today’s challenge: Write about your favorite health iPhone app. Suggested by Lori. And/Or write about your favorite social network. Do you love Twitter, Facebook? Pinterest? Why? 

I don’t really have a favorite health application but my kids and I often use the “Track3” application. It has many features specifically designed for those with diabetes. The feature we use most frequently is under the nutrition category. It has the nutritional information for hundreds of restaurants so when we grab a double scoop german chocolate cake ice-cream creation from Cold Stone creamery we know the carb count. Rapid Calc is another that we have used in the past when my daughter was on a pump hiatus. It basically acts like a pump without actually giving the insulin – you program all the various carb/insulin ratios and correction factors and it does the math and also keeps track of Insulin On Board “Active insulin”. We don’t use it when the kids are pumping but its a great application for those using multiple daily injections. It does keep records that can be emailed so trends can be identified.

Now on to the fun stuff – SOCIAL MEDIA!!!!

day11photo

Oh how I love social media – let me count the ways.

A favorite I can not choose for without each I fear I’d lose

A tweet sent in the night while low sugars I fight

A post that shares a smile makes a continent feel like only a mile

A picture on Instagram brightens my day while I get to see how my friends play

A recipe on Pinterest leaves me less hungry today

This is the end of my poem.

Ok I’m a bit loopy without any coffee – see previous post.

Moving to California back in August of 2012 (I can’t believe its 9 months) meant I left behind all my real life friends and support network. I miss my friends and the Austin JDRF. Still thanks to social media I rarely feel alone. I have met (some in real life) the most amazing, strong, inspiring people via twitter and some I’ve carried over to Facebook. I can’t honestly choose a favorite social media. Each offers a unique experience. Twitter lets me find others that share my struggles.  DSMA (Diabetes Social Media Advocacy) has a tweetchat every Wednesday – an hour each week that keeps me sane – even if it is because I appear to be the most sane of the participants. Facebook doesn’t limit my characters and I can share pictures of my family and friends easily. Pinterest is a great way to spend an almost-all-nighter while I giggle at memes or plan my dream home. Instagram lets me see what my friends are having for breakfast, lunch and dinner. 😉

Social media  – whichever network we use allows us to advocate, educate, and be together even when separated by mountains, deserts, prairies and oceans. Social media is my village. (Insert village idiot comment here)