Black Hole

Today is day one of the Health Activists Writers Month Challenge. The HAWMC is a month-long even put on by WEGO Health. Each day there is a new prompt health activist bloggers are asked to write about. Even though today is day one it is not to late to join in on the fun – its free and is a great way to get started writing a blog or reenergize your existing blog if you are like me and get lazy distracted. You can find the link HERE to sign up and get the prompts.

Todays prompt: Why you write – tell us a little bit about why you write about your health online and what got you started. AND/Or Why HAWMC? This is our third year of the HAWMC – why did you get involved this year? Are you a newbie or a veteran?

This is my second year of HAWMC. I had only started my blog in Jan of 2012 and HAWMC was a lifesaver last year since by April I felt like I was out of things to say. Im back because HAWMC keeps me fresh and introduced me to many new friends.

The bigger question – why do I write?

My house is a black hole. Things get lost all the time, never to be found again. My sons iPod, my daughters favorite ring, my son’s cell phone, socks, my favorite sweater, and of course my sanity.

BTW - I can't draw very well and my daughter is busy with homework so she can't help.

BTW – I can’t draw very well and my daughter is busy with homework so she can’t help.

Of course we are in a new house (well new to us) having moved here from TX last August. Our last house was a black hole too so maybe it isn’t the house so much as me.

I’m not very organized. My home is often cluttered with papers, old mail, toys, books, homework, clothing. For this reason I’m not a fan of surprise visits. If I know someone is coming over I can tidy up fairly quick even if it means tossing all the odds and ends into the guest bedroom.

My brain is just as disorganized. I don’t believe it is something that can be diagnosed. I am just very scatter brained. I could try to blame diabetes. But honestly the disorganized brain was a pre-existing condition for me. Although likely defiantly exasperated by having diabetes in the house.

FYI – in case this is your first visit to my blog – I have two kids with type 1 diabetes. Which is also the main theme of my blog.

I digressed a bit there (disorganized brain). I write because it keeps my brain a bit more focused. It provides an outlet for all my jumbled up thoughts. I write like I talk and that is also often jumbled up.

I also write to remember (note the black hole title and the fact that things in my house disappear never to be seen again). I have a difficult time remembering things. I’m not only talking about birthdays or items on a grocery list. I mean I have difficulty remembering details of past events. Why is this a problem? Because one day I’d like to share my experiences with others by speaking at conferences or even writing a book. I pity the editor that has to proofread my work (spelling is less great and I have an issue with parenthesis and crazy run-ons).

I’ve tried keeping a journal but I lost interest and then I lost it.

I don’t write on my blog as often as I’d like – life gets in the way but the thoughts I can and do share will always be here for me to find (although I have forgotten my password a number of times).

As a health activist I write about diabetes. Having two children with type 1 diabetes is difficult frustrating saddening scary challenging exhausting hurtful stressful draining  ALL ENCOMPASSING. It can also be empowering and that is where I try to focus most of my attention.

Thanks for stopping by – good luck to you if you are new to HAWMC or a veteran. Be sure to leave me a comment with your web address so I can check out your thoughts.

30 Days 30 Posts

November is National Blog Posting Month. Starting November 1st I will be taking part in the 30 Day 30 Posts challenge as a Health Activist and Diabetes Awareness Advocate.

NHBPM 2012 (Link to sign up for National Blog Posting Month)

Now I know what your thinking – I have not posted much since July (maybe even June). Clearly I’ve gotten lazy or complacent. This is not true. I have just been overwhelmed – to the point that I could just as easily be blogging about depression and anxiety along with Diabetes. Seems the move has undone me. The thought of a move being my undoing makes me angry and sad. There are so many that suffer much bigger things – yet I would find myself completely unpredictable over the last few months – some days are good others I am ready to load up the van and drive back to Texas.

Things that have kept me sane are:

  • Wednesday evenings spent with 30+ of my closest DOC (Diabetes Online Community) friends. If you haven’t attended a Wednesday night twitter chat with the DOC and you have diabetes or love someone who does please check it out. It is at 6pm ET – you can get the link here (scroll to bottom and click twitter chat) And while you are checking out the DSMA site – be sure to check out the monthly blog carnivals.
  • I have a neighbor who is at least as crazy as me – she has welcomed us with open arms, her son is a great playmate for my boys and honestly she makes me laugh.
  • A texting group I refer to as “The Hive”. It includes 5 of the most wonderful DOC members – they carry on conversations and when I can I jump in too. It is like having a pocket full of friends and they are always with me.
  • Its fall and the leaves are changing – that doesn’t really happen to well in Texas. I love the smell of fallen leaves and crunch beneath my feet.
  • I get to bake with pumpkin for the next few months (yes I know I could always bake with pumpkin but I like to save it for the fall).
I have a dozen blog drafts started with a range of topics – TrialNet, Health Insurance, The need for FDA approval for the Dexcom 4G for under 17, Sleep Deprivation, and Advocating for our cwd in school. Some of the posts I will finish and share. Others I likely wont – I mostly wrote them for myself. Hoping that the NHBPM 2012 will get me writing again – and reading. Surely next week I’ll have time (a phrase I have been saying every week since Aug 20th.). Hope to see my DOC friends participating in NHBPM. Cheers.

 

 

Challenge Accepted

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

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

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

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

So this prompt asks what my top 3 challenges are.

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

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

 

Brown Paper Packages Tied Up With Ribbon

August 22 • Day 2: These are A Few of My Favorite Things Post (trying to catch up with some great prompts from WEGO Health Advocating for Another Blog Carnival)

List time! Write 5-10 of your favorite things about your loved one. Celebrate their uniqueness and be sure to tell us why those are your favorite things.

 

Sweetstuff  

Sweetstuff:

  • Responsible – takes care of her diabetes with little help, watches her brothers when needed, always does homework without reminders.
  • Kind to all living things – animal lover (and they love her back), helps strangers and friends without questions.
  • Wise and witty (slightly sarcastic) – she is wise beyond her years and has a quick mind that often gets her into trouble with a touch of sarcasm.
  • Humble – she accepts a compliment with grace, admits she isn’t perfect, asks for help when needed.
  • Compassionate – she feels deeply for all those she knows both on two legs or four. She will sacrifice her own comfort for others and seeks to help when needed.

Sugarboy

 


Sugarboy:

  • Joyful – the boy is always smiling and finds joy in most everything in life.
  • Sincere – he is honest and true to his heart.
  • Funny – he shares jokes and funny stories and finds humor easily in even difficult situations.
  • Resourceful – he will find a way to make something happen if it is important to him.
  • Kind – Aside from with his sibling he rarely shares a cross word and will help all who are in need.

Middles

 

Middles:

  • Generous – the boy will always give up what he has if it will result in happiness for another.
  • Sensitive – His heart is too big for his brain at times and thus he can get his feelings hurt easily but this also allows him to recognize how easily others can be hurt.
  • Polite – ALWAYS remembers his manners.
  • Fearless – he will try new things without a second thought – he is afraid of nothing other than developing diabetes (can you blame him?)
  • Loving – For every hug I get from either of my other two kiddos I get three from Middles.

 

What do you see?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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