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candy at midnight skip to main skip to sidebar candy at midnight our son has type 1 diabetes every day we hope and pray for a cure november 9 2010 it s d blog day the topic this year is 6 things you want people to know about diabetes i could fill volumes with what i would like the people in noah s life to know about his disease so breaking it down to 6 is a bit of a challenge but here goes 1 type 1 diabetes is a tough disease to manage from one day to the next blood glucose can fluctuate with seemingly no explanation it could be something as simple as stressing over a math test or eating breakfast a half hour later than usual that can send blood sugars roaming out of the comfort zone and into the danger zone chasing a high with a correction bolus water and exercise sometimes just plain doesn t do the trick the same goes for pesky lows sometimes and it can be frustrating knowing that through all your best efforts diabetes is essentially blowing raspberries at you behind your back 2 a good thing that came out of this journey is the overabundance of support that s available within the diabetes oc as the mom of a newly diagnosed little boy 5 years ago i was pretty much lost in a new world i didn t know how to navigate my husband and i felt isolated not knowing anyone with whom we could identify what we needed was someone to ease our fears and let us know that we weren t totally screwing things up we have received so much help from so many people over the years with everything from recipes to 504 plan advice that kind of support is priceless and we are truly grateful 3 insulin is not a cure i saw this on a t shirt once and it has since become my mantra any time an opportunity comes to raise funds for research or to simply answer a question for someone who wants to know more about diabetes so much more can and will be done in the way of research for now insulin is what is available and we look so forward to the day we can have a more permanent solution i m hopeful it will happen in noah s lifetime 4 insulin is the thing that s keeping my son alive i can t stress this enough to the insurance company who is refusing to allow us more than 1 bottle per month when that vial gets low i get mad and resentful at the fact that insurance companies will practically give away other drugs that to me are frivolous viagra cialis and non life sustaining but they give me crap about how much insulin noah is going through it s not right 5 we re lucky to have such a constant emphasis on noah s health and diet i always say he s one of the healthiest people i know we have learned how to help him make good food choices and he has such a healthy attitude towards what he eats we have always steered him towards trying new things while at the same time never making him feel like any food is off limits he gets to have cake at birthdays and candy at halloween just like any other kid but he knows that it s because he makes the right choices all the other days that creates that perfect balance 6 type 1 diabetes is a bully and a sore loser it tries to be all badass throwing a high blood glucose at noah right before bed or surprising him with a nasty low the minute he sits down for a quiz at school noah is stronger than diabetes and always manages to get up in it s face bring his a game and win in the end what can i say the kid is good posted by lea at 8 24 am 8 comments labels awareness d blog day diabetes type 1 october 21 2010 imagine doing everything you re told you stick to the rules learn the tricks and jump through all the hoops you do this every second of every day you do this out of fear you do it because you are a parent and you have to you do it out of love imagine doing all that and watching your most precious blessing the thing you ve been fighting for and caring for and loving so dearly slip away i don t know them this family that must feel like their world has come crashing down on them the recent death of their 13 year old child caused by a rare syndrom e due to type 1 diabetes is something that can t be explained away there is nothing and no one to set blame to my heart is breaking for eilish and her family prayer feels so painfully inadequate but i do it anyway it s cutting right into my mother s heart all i can do is think of noah and my god how will i sleep tonight i m sure along with so many others i won t posted by lea at 9 17 am 1 comments labels coping diabetes type 1 june 14 2010 pray when noah was diagnosed with type 1 diabetes we felt like our world was falling apart i remember the doctor s explanation in a vague dreamlike way nothing about what was said is crystal clear in my mind but the feeling in the pit of my stomach is something i will never forget sick and twisty not butterflies but the beating of leathery bat s wings in the 5 years since life has become as normal and everyday as it can be when you re a busy family with the occasional crazy blood glucose or weird a1c result i was confident that new sense of normal meant i would never feel that bat in my stomach again as the saying goes life goes on unfortunately the news of late has been anything but normal around here my husband had brain surgery to remove a tumor that was recently found and was causing him to have seizures the day he was to leave the hospital we were told by the oncologist that the tumor was a malignant oligoastrocytoma we were not prepared at all for that outcome of course we knew of the possibility of cancer but it was presented to us as remote by the many specialists visited over the course of 2 months leading up to surgery i sat in the hospital room with my husband and cried while the family of his roommate on the other side of the curtain joked and laughed it s funny the things that stick in your memories i also remember the overwhelming feeling of being cheated out of a long life with the man i promised to grow old with later that day they sent him home three days went by and we shared the news with immediate family the outpouring of support after coming home was unbelievable meals were dropped off at our home cards and phone calls were abundant as were words of encouragement and prayer we began to feel as though we could get through it i had been relying on my mom to hang with noah during the days i stayed late at mgh and she was so generous with her time and her help all while nursing a chronic sore back so on jon s third day home from the hospital it was a nice treat when my mom stopped by the house just to visit and hang out we sat and talked that s when my mom told me that she was diagnosed with cancer during the same week jon was recovering from his brain surgery it was her back pain that prompted her to visit her doctor i learned that while i was at mgh in the morning my mom was also at mgh having tests and meeting with specialists then she would drive the hour back up north to be here at the house when noah got home from school i sat there completely ripped apart and crying thinking of how my mom was alone when she learned that cancer invaded her lungs liver and spine that was 2 months ago lots of things have happened since then jon has started radiation therapy and is at the halfway mark mom is doing chemotherapy and is tough as nails noah took the news very hard at first but over the last few weeks he s been doing better the truth is it feels like living in the twilight zone there are good days and shitty days despite feeling like the rug has been pulled out from under my life i refuse to sit in the corner and cry the support from friends and family has been so uplifting and has proven to be incredibly healing who knows what will happen in the next year month or even day please take the time to tell the people you love just how much they mean to you take care of your health go to the doctor if something seems off and please pray posted by lea at 7 34 pm 22 comments labels cancer diabetes family february 24 2010 i don t even know how to lead into this story so i ll just blurt it out we ve been going through a lot here at our house lately we recently found out that my husband has a brain tumor his team of doctors are confident it s not cancer and that they will be able to remove most if not all of the tumor he did a week long stint at mgh in boston for extended eeg testing a couple weeks ago and now we wait for a surgery date during this time noah has had some crazy blood sugars and i m pretty sure the stress and worry about what s going on with his dad is a huge contributing factor so i m trying my best to be extremely positive but really i feel like a swimmer caught in the undertow i honestly don t know how to take on this much i don t know how much time i ll have to blog but i know it helps to have a place to vent it all so i may just be a little blogging machine we ll see posted by lea at 7 34 pm 12 comments labels coping feeling craptastic life december 15 2009 site change last night at our house me assume the position kiddo which side noah the right this time me you ready noah not yet deep breaths me ready now noah hold on a few more deep breaths okay ow me honey i m sorry eyes filling up i m sorry you have to always do this crap noah it s okay i have to do it because diabetes just came and got me posted by lea at 8 28 am 7 comments labels awareness diabetes kid pump site changes type 1 december 10 2009 feeling the pinch parenting a child who has type 1 comes with all kinds of challenges a tough one is identifying with how a high or a low must feel to noah because neither me or my husband have diabetes noah experiences some symptoms of a low blood sugar that i can see readily shaky hands and pale sweaty face how he feels on the inside is a bit of a mystery to me and although he s tried to describe the cruddy feeling that washes over him it s not something i can really relate to today i got to experience a small taste of that cruddy feeling for myself since july i ve been seeing a nutritionist to get my weight under control i ve been doing pretty good too i ve lost 30 lbs so far and have about 20 more to go before i reach my goal because of the weight loss my body is a little out of whack i used to always be hungry and i was told that it was because i constantly snacked and grazed during the day keeping my blood glucose on the higher end of the scpectrum now that i eat normally my body no longer craves the constant flow of food and i m no longer always feeling hungry to keep up with that demand the problem is even though i m eating my calories for the day i don t feel hungry enough to snack between meals at all that caused a problem for me early this afternoon right before lunch i felt shaky and pretty cruddy i couldn t think straight and became panicky i wondered out loud if this is only half of what a low feels like it so sucks i grabbed a clementine off the counter scarfed it and sat staring at the clock on the microwave a full ten minutes and then i did something out of curiosity i went to the d drawer and grabbed noah s spare test kit and used it 82 mg dl i guess it s not bad for an adult right but all i can think of is that reading came after i ate the clementine so i wonder what it was before i also can t get that feeling of confusion and anxiety out of my head it was unpleasant and uncomfortable i imagine my blood sugar wasn t all that low to begin with but now i see a tiny bit how noah or anyone else with diabetes for that matter feels when a low starts i m amazed at how anyone going through a low can even function enough to go through the motions of a blood glucose test let alone rummage around for something to treat the low afterward i m also amazed at the fact that most type 1 s test 10 times a day because my pinky finger still hurts from the lancet yep i m a baby i don t know how you guys all do it all day every day yeah i got a small taste of what it s like and it made a big impact posted by lea at 1 28 pm 5 comments labels awareness diabetes low type 1 december 2 2009 hold on tight this might be the most adorable thing ever posted by lea at 9 02 am 0 comments labels cute fun older posts home subscribe to posts atom classid about me view my complete profile friends from the diabetes oc a shot in the dark 14 years ago ask manny hernandez curiousgirl 15 years ago danieldoo diabetes daily diabetes technology blog diabetesaliciousness 6 years ago latest activity on tu diabetes a community for people touched by diabetes lemonade life 15 years ago major bedhead meanderings 13 years ago mom wants a diabetes cure 14 years ago my son has diabetes 10 years ago orsa aetas 17 years ago our diabetic life 7 years ago scott johnson six until me 12 years ago tales of my thirties the b a d blog 9 years ago the diabetes oc website the diabetes talkfest blog 9 months ago welcome to our crazy happy life 11 years ago blog archive 2010 4 november 1 it s d blog day october 1 june 1 february 1 2009 15 december 3 november 2 september 1 july 3 may 1 april 1 march 1 january 3 2008 46 november 3 october 3 september 2 august 2 july 6 june 2 may 5 april 8 march 6 february 7 january 2 2007 38 december 2 november 10 october 6 september 1 august 3 july 5 june 11