From time to time I feel an unexplained urge to rearrange a well known poem or song. This Christmas, Nikki and I have been amusing ourselves with some of the great pins we've seen on Pinterest. They inspired us to change the words to Jingle Bells to suit a T1D's mood during a 3 a.m. low. We hope it makes you smile a bit, because sometimes that's all we can do.
Sunday, December 9, 2012
From time to time I feel an unexplained urge to rearrange a well known poem or song. This Christmas, Nikki and I have been amusing ourselves with some of the great pins we've seen on Pinterest. They inspired us to change the words to Jingle Bells to suit a T1D's mood during a 3 a.m. low. We hope it makes you smile a bit, because sometimes that's all we can do.
Monday, November 26, 2012
|Giving Rufus the Diabetes Bear a check-up|
|My Girls and My Kiddos|
Posted by No Sugar Needed at 8:19 PM
Thursday, November 15, 2012
I just wanted to share a short slideshow to show a snippet of the overwhelming support Nikki, Bryan, Amber and I received on World Diabetes Day. GOD is good.
Sunday, November 11, 2012
Posted by No Sugar Needed at 6:38 PM
Friday, November 9, 2012
- Diabetes affects nearly 24 million Americans (7.8 percent of the population)
- In the United States, a new case of diabetes is diagnosed every 30 seconds; more than 1.6 million people are diagnosed each year.
- Forty-one children are diagnosed with type 1 diabetes each and every day.
- More than $174 Billion is spent annually on healthcare costs related to diabetes in the United States.
- Diabetes kills one American every three minutes.
Thursday, November 1, 2012
November 1st begins Diabetes Awareness Month. As with all T1D families, this month brings about a wide range of emotions; way too many to properly put into a short blog article. There are 3 things that I would, as I often do, like to remind non-T1D families:
- Insulin is not a cure. Let me say that again, INSULIN IS NOT A CURE....IT IS LIFE SUPPORT. Its only function is to keep a T1D alive, which is accomplished through multiple, daily injections or site insertions (similar to an i.v. insertion).
- The onset of type 1 diabetes has NOTHING TO DO WITH DIET OR LIFESTYLE. There is nothing a person can do to prevent T1D and, for now, nothing a T1D can do to get rid of it. Type 1 diabetes is NOT contagious; you can't "catch it".
- A T1D can do anything a non-T1D can do; which includes eating sugar. Yes, they can dance, swim, run, play football, baseball, soccer.......etc., etc. In fact, there are many gold medal winning, 1st place finishing, national champion achieving athletes that have T1D.
My own life has been touched by a wide variety of people who have to live with type 1 diabetes. This includes my own daughter/dancer/artist, ballet teachers, a beauty pageant winner, a United States Olympic athlete, a nurse, a school psychologist, a high school math teacher, a niece, a nephew and too many teenagers and kids to count. The one universal trait they all share? Strength Beyond Measure. Their daily fight to stay alive has shown me, with complete clarity, what is truly important in life. So let me close this blog by saying
Click HERE to see our Diabetes Pinterest Board
Tuesday, October 16, 2012
|Feeling Great, Looking Beautiful!|
Her entrance into high school has been a complete success and Nikki is thriving both socially, emotionally and physically. Her energy level is, in my opinion, off the charts and it's a pleasure to watch. In addition to her normal activities centered around dance classes (ballet, tap, jazz and hip hop), she has picked up Scottish Highland Dance - which she is totally in love with. She is also a student dance teacher this year and loves working with the young dancers (do I see a future in some of kind teacher role for her?). Finally, Nikki is taking French and is involved in the Art Club at school. Oh, and she's still on the honor roll.
I believe, as I always have, that Nikki is a true hero. She is a living testament to what you can achieve when you make a conscious choice NOT to be defined by circumstances out of your control; but by how you chose to deal with those circumstances.
Sunday, August 5, 2012
Sunday, July 29, 2012
Tuesday, May 29, 2012
Seems that there are many, many things going on in the Turner household over the next couple of weeks, so I'm predicting lots of new blog entries in a short period of time. I hope you'll indulge me as I brag and share our milestones.
As you may remember, we recently struggled with a rather touchy situation at Nikki's school. Since I felt, and continue to stand by the resulting educational insights that the (initially) negative situation provided; I feel just as strong about giving equal insights to a wonderfully positive event that took place today. Nikki's core group of teachers have been amazing, wonderful educators and self-esteem boosters. I will always be thankful for their influence in her life. Today was a great example of their kind hearts. Her 8th grade team was celebrating (this afternoon) an event from last week, with pizza. In an effort to figure out how to make sure Nikki was able to participate in the festivities, we were notified of this in advance; thus, allowing me to make plans with my own school to get time off and get some gluten free food Nikki's way in time for the 'party'.
Nikki's love of baking and total obsession with baking for any and every event that comes down the pike lately (guess what she wants to major in once she hits college) caused her to want to bake for her class. She got with her homeroom teacher to find out if she could bake a dessert for her team and get a head count etc. So she spent last night baking up a storm, with the final product pictured above. DELICIOUS - and I mean rather deliciously addicting -- mini cupcakes, with baby mushroom houses (Smurf houses?) she created from a gummy candy. ALL GLUTEN FREE, & 100% baked and decorated by Nikki Mouse! Thank you Duncan Hines for producing some tasty and easy to work with gluten free mixes.
When Nikki came home from school today she was on cloud nine. It seems that this group of teachers had taken it upon themselves to try and find a gluten free pizza that could be delivered with the regular pizzas. Alas, we live a little out in the country and LaRosa's gluten free pizza hasn't hit our franchise stores YET -- but the fact that they were thinking of her meant more to her than if they had given her a million bucks. To top it off, her teachers and friends loved the cupcakes; and finally, her homeroom teacher wrote a letter to each of his students telling each one of them how important they have been to him. Nikki is still walking around with a silly, happy smile plastered on her beautiful face.
I suppose I can't really add much more to this entry; except maybe GOD IS GOOD ALL THE TIME.
Posted by No Sugar Needed at 8:03 PM
Monday, May 28, 2012
Exciting news for ‘us’ Disney lovers and PWD’s (people
with diabetes) and/or their families; Disney announces Coco the Monkey – the first
Disney character with diabetes. The idea for Coco is the result of collaboration between
the folks at Disney and the mother of singer Nick Jonas. Following is a
synopsis of the upcoming book Coco and Goofy’s Goofy Day as described on the
Diabetes Daily website:
We are very excited about this new character and believe it will make a huge difference in the lives of many young PWD’s – okay and their grown up counterparts and families. As we say in our house, you are never too old for Disney.
Monday, May 21, 2012
May is Celiac Awareness month and our family can attest to the overwhelming need for just that.......celiac awareness. So....what is celiac? I'll attempt, in this post, to give a brief overview of celiac, what it can do/does and the seriousness of the disease.
Celiac is an autoimmune disorder of the digestive system. It affects 1 in 133 people (celiac.com). I found a rather simple explanation of it on the Mayo Clinic's website: Celiac (SEE-lee-ak) disease is a digestive condition triggered by consumption of the protein gluten, which is primarily (this does not mean only) found in bread, pasta, cookies, pizza crust and many other foods containing wheat, barley or rye. People with celiac disease who eat foods containing gluten experience an immune reaction in their small intestines, causing damage to the inner surface of the small intestine and an inability to absorb certain nutrients.Celiac disease can cause abdominal pain and diarrhea. Eventually, the decreased absorption of nutrients (malabsorption) that occurs with celiac disease can cause vitamin deficiencies that deprive your brain, peripheral nervous system, bones, liver and other organs of vital nourishment.
Gluten can also be found in beauty and hygiene products. A person with celiac cannot consume food that has had ANY contact - no matter how small - with anything containing gluten. Complications from celiac disease, especially when it goes un-managed, include: malnutrition, loss of bone density, lactose intolerance, intestinal cancers, neurological complications, and dermatitis.
By itself this is a complicated, frustrating disease. Combined with type 1 diabetes, and it is.....well, more complicated/more frustrating (????). Combine those factors with 14 year old hormones and it's a tough road to be assigned. In short, celiac is a very serious autoimmune illness. You cannot have "a little celiac" and it is not a food allergy. There is no cure. No magic pill or shot. You cannot eat "just a little" gluten (well, I suppose if you are a fan of intense abdominal pain you could). It can only be controlled through diet. Check out Celiac.com or Celiac.org to find out more.
All for now - and remember......EDUCATE, INVESTIGATE, INCORPORATE.....you never know who you'll help by doing so!
I'll be posting another bit of writing in the next day or so. Sharing some very special words, from some very special and unforgettable little people.
Thursday, May 10, 2012
She speaks with wisdom, and faithful instruction is on her tongue. She watches over the affairs of her household and does not eat the bread of idleness. Her children arise and call her blessed;her husband also, and he praises her. Proverbs 31: 26-28
Posted by No Sugar Needed at 11:15 PM
Saturday, April 28, 2012
This past Thursday, Nikki was able to come to work with me for an hour or so for Take Your Child to Work Day. One of my sweet kiddos – let’s call her Hermione – had been out sick most of the week. The day before, she had been tested for diabetes. Thank GOD the test was negative. However, the word ‘diabetes’ evidently did not throw Hermione for a loop. According to her mom, she simply replied “oh, I know all about the diabetes, Nikki has that”. When Nikki arrived in my classroom, Hermione was bursting at the seams for some alone time with Nik -- to tell her all about her doctor visit. Nikki was just as anxious to love on Hermione, simply because she was so thankful that this sweet little girl was not going to have to face a life sentence of type 1. By-the-way, it’s worth noting that Hermione is the same age Nikki was when she was diagnosed; I’m sure Nikki was very aware of that fact as well. Anyway, it probably goes without saying that when I looked across the room and happened to catch Hermione wrapping her little arms around my Nikki Mouse’s neck…..I got a tiny bit teary, but just a little.
Okay, enough of that. I am choosing to focus on the sweet moment s from this week, and that’s all. To loosely quote the final few lines from one of my favorite children’s books …..Both of my girls, once again, made me proud to be their mamma -- and that’s all there is, there isn’t any more.
Posted by No Sugar Needed at 3:18 AM
Friday, April 20, 2012
I have spent this week thinking about how to write this blog entry. I live in a small town and often that means everyone knows your business – and, in this case, it may mean that everyone will know who I’m talking about. So I must make this VERY CLEAR: the intention of this writing is education, NOT ‘revenge blogging’. Having said that, I feel very strongly about sharing the incident because it will truly help people understand what T1D and/or celiac kids sometimes deal with at the hands (intentional or not) of adults and learn how to avoid repeating the same mistakes.
This past week one of my daughter’s middle school teachers allowed a student to bring in a small – personal sized cake for her friend. The student is her daughter and the other student was her daughter’s close friend. This is not something that has been done for any of the other 40+ students in the class. While, this part of the story goes against my personal beliefs as a teacher myself, it is not something I would have intervened in.
** this teacher has known my daughter all her life and knows her medical situation. **
In order to allow the ‘birthday girl’ the opportunity to eat her cake in a class full of kids, who didn’t have cake, the teacher purchased ice cream sandwiches and had her daughter’s other friends pass them out to the rest of the class. MY DAUGHTER cannot eat ice cream sandwiches because they contain gluten. Again, keep in mind the teacher knows my daughter’s situation. As the students got to Nikki’s desk, Nikki said “no thank you” but the lovely young lady tossed it on her desk anyway. Unable to keep from hoping, Nikki got up and went to the empty ice cream box praying that maybe, just maybe, these ice cream sandwiches were gluten free. Nope. So she gave them to her friends. (Had the sandwiches been gluten free, she would have had to leave the room to check her blood – missing out on enjoying a snack with friends either way).
I must stop here to say what wonderful teenage friends my daughter has. The girls refused to eat directly in front of Nikki, so they took turns going to the other side of the room to eat their ice cream. At no time was Nikki given the choice to go get one of her snacks, the teacher didn’t acknowledge her in any way. My child was forced to sit and watch 40+ classmates eat what was one of her favorite foods, before celiac.
To say that I was LIVID would be putting it mildly. The desire to extinguish someone’s life signs was an overwhelming urge – of course, I mean figuratively. I made a phone call to the Principal on the spot – something I SHOULD NOT HAVE DONE in that frame of mind. Thankfully, he wasn’t in so I only left a crazy, ranty message. After getting some much needed feedback from our webpage -- and after a very dear friend (I love you Jim) challenged me in some areas -- I was able to calm down, collect my thoughts, separate my personal hurt – remember the teacher in question was someone I had considered a family friend – from the facts and then write an intelligent letter to the Principal.
The Principal responded to my e-mail that evening saying he would contact me in the morning. True to his word, he called me and we were able to talk through the situation. He was very understanding and upset on Nikki’s behalf. I e-mailed some educational information along with my letter the night before; he'd read the material and was attempting to digest all of it. My hope is that this type of thing never happens again, to Nikki or any other student and I feel very confident that the Principal has the same thought. I won’t go into further detail regarding our conversation, but I believe we managed to turn a very inappropriate, unnecessary situation into a learning opportunity. The teacher at the heart of this matter did finally apologize to Nikki, after about 4 days. I know she is angry that she was called on this, but as a leader in our community – representing far more than just the teaching staff – I hope she takes some time to reflect on the power adults have to damage kids or lift them up. Nikki was not lifted up this week and then spent the remainder of the week worrying that she had hurt this teacher’s feelings. My girl – I wouldn’t change her for the world.
Children with chronic illnesses have to face life and death on a daily basis. They face things that many adults couldn’t handle. To have a kid penalized in a situation like this is unforgiveable. To take your anger out on that child because you were called on CHOICES YOU MADE is something I have no words for. To watch my child respond with her typical smile and concern for the one hurting her is priceless and something that is a GOD given aspect of her soul – it’s where her strength comes from.
I challenge every teacher to stop and think: how would I feel if this way MY CHILD?
We will continue to analyze, and monitor, the situation and use it as a learning and educational tool. BUT we need to move on from this very personal event; so we have made peace with it and have forgiven everyone involved.
Like I’ve said many times lately: If GOD brings you to it, he WILL bring you through it.
Saturday, April 14, 2012
I've decided, based on the extreme silliness of my mood lately, that it was worthwhile to do a repeat of some diabetes humor. So, here goes. Below you'll find a small collection of humor from parents of diabetic kids, and yes many of them are mine.
YOU KNOW YOU'RE THE PARENT OF A DIABETIC WHEN.....
In conversation, your husband describes his personality as Type 1 instead of Type A.
You ask your child how her day at school was, and she answers with a number.
The microwave beeps and your d-child shouts “that wasn’t me!”
Everyone in the family says they are "low" instead of hungry!
When your parents answer the phone, the first thing they say is "What's wrong?"
You have no problem asking your child if she is "high" when you're in public.
You make sure your child has (gluten free)candy in bed with them.
You ask your child what she had for lunch and she replies "45 carbs!"
Your daughter wakes you up in the middle of the night and says, "Mommy, I'm beeping."
Your child says "I'm tired" and you ALWAYS have to wonder if he's low, high, or just plain tired.
You travel with as much food as you do baggage!
You hear another parent wish that kids would come with instructions and your diabetic child pipes in and says, "I do, and I don't leave home with out them."
Your first grader calls you from school to tell you that his teachers, nurse, and health aide are all absent, so you decide to go to first grade for the day.
Your child refers to sequel movies as "Type 2".
You automatically wake up at 2:00 a.m.
You find blood sugar test strips in every possible, and impossible, space inside and outside your home.
Every meal turns into a math equation followed by scientific research.
Your child falls and before you ask if she's injured, you ask, "How's your pump site, is your pump okay?"
You base your entire self-worth on your kid's last A1C!
You hear your child scream "I'm hooked" and you run as fast as you can in that direction, because you know her pump tubing is now wrapped around whatever inanimate object jumped in front of her.
You know what glucagon is and what it does.
You wake up the entire house because you accidentally stick your daughter's best friend's finger during middle of the night blood checks - they look way too much alike.
Your daughter has a sleep over and her friends line up for blood sugar checks, and none of them have diabetes.
Your daughter begins to miss the school nurse over summer break.
Your child refers to having a cold as being 'real people sick'.
Students in your classroom now ask you how many carbs are in their snack.
You laugh out loud reading this list.
Wednesday, April 11, 2012
I know my blogs, especially lately, are a “tad” sappy; but then I suppose that is me. I must warn you that this entry will fall squarely into the “sappiness” category; yet, it is a story I must share.
After posting last week’s ‘Nikki’s 9th Live-a-Betes’ video, I decided to share it with my class (I guess I never truly take a break from every T1D educational opportunity) AND my kiddos love my daughters, so I knew they would love seeing all the pictures. It was quite interesting to hear their comments as the video took us from Nikki at age 5 through her various trials, bumps and triumphs where T1D and Celiac are concerned. They gasped at every single hospital, finger stick and site photo; and ooo’d over the pictures of Nikki dancing on stage. One of my little girls was fairly quiet throughout the video, UNTIL it got to the last picture, which showed Nikki in one of her performance outfits, smiling and sparkling. My student stood up, smiled and said “THAT’S THE REAL NIKKI!” I’m sure it’s no surprise that this one heartfelt exclamation made me more than a little teary.
I will, forever, count that statement as one of Nikki’s triumphs over T1D. Sweet, kind and generous little hearts don’t see diabetes or celiac when they look at Nikki. In spite of the freedom with which she talks openly about both diseases, the young people she touches see only HER and her shine. When I got home and shared this story with Nikki and Amber, I’m proud to say they both responded exactly like their sappy mom….they got a little teary. I’m one proud momma and teacher.
Thursday, April 5, 2012
Tuesday, April 3, 2012
Nikki and I were looking through some gluten free blogs tonight and happened upon what Nikki will call her miracle food - GLUTEN FREE CHICKEN NUGGETS AND GLUTEN FREE MOZZARELLA STICKS.
As you know, Nik has been battling burn-out lately and much of that we can attribute to her frustration with food. When she was diagnosed with Celiac back in September, she had to give up many favorite comfort foods. At the top of the list were her 2 all time favs - chicken nuggets and mozzarella sticks. Needless to say, we've ordered a supply of each food item. We'll update regarding their taste as soon as we get a chance to try them. As of now, I can only find them online at Health is Wealth Foods.
Last week I found frozen, gluten free burritos and macaroni and cheese -- at our local Meijer (Meijer just plain rocks when it comes to a large gluten free selection). These were delicious! They will be a blessing for all those long Dance Center nights when Nikki has to run from school to dance lessons to recital practice to performances. MOST IMPORTANTLY, all these new found products have put a smile on my Mouse's face again.
My next blog will be in 'celebration' of Nikki's 9th Live-a-Betes anniversary. WOW, 9 years. All for now.
Saturday, March 24, 2012
As I was preparing my lesson plans for next week, I had one of my random THAT’S MY NEXT BlOG moments. I know, I know, how on earth can doing a class lesson plan relate, in any way, to our diabetes blog? WWWeeelll, I was thinking about my young students who have been battling this crazy virus lately; 3 of which have come down with a rather high fever during the day, while in my care. I have a special place in my classroom (close to me) where I’ve been having them lay as they wait for their parents – isolated from the other children but still within my TLC.
>>>I must add here, none of the 3 were in the room during the time their ill classmates had a fever so they didn’t catch it from each other; and all items used were immediately removed by me and washed (in case some of you were gasping at my keeping my ‘babies’ in my room, under my overprotective care). <<<<
Okay, back to my original observations. Each of my sick ones immediately requested to hold onto Ruby the Diabetes Bear while they waited for their parent. Nikki came to speak at our school back in November; to help teach young kids about T1D. Ruby is one of the things she uses when she talks to young children. For anyone who may not know, years ago JDRF produced 2 bears – Ruby and Rufus the diabetes bears. Each of them has colorful patches on all the areas where a T1D child can receive injections/site insertions, etc. Each bear wears a Medic-Alert bracelet stating he/she has diabetes. Nikki used to give Ruby a shot whenever she got one of her many insulin injections - back when she was on what we called her N & R regimen (a manually mixed “cocktail” of long acting and fast acting insulin that had to be given through an injection 3 or more times per day.) Doing this was mentally helpful for Nikki – especially at such a young age. Ruby also helped prepare her for when she would eventually give herself her own injections; which she could do by the age of 7. Ruby was a very special friend to Nikki during a very fragile time.
Now, Ruby lives in my classroom for the majority of the year (she comes home in the summer) and is constantly encircled by tiny, loving hand. All of my students, past and present, LOVE playing with her. However, lately I’ve noticed my kiddos wanting to hold Ruby when they feel bad or when they are having a rough day. I asked one of my more precocious students – whom I cannot name, but I simply adore – what made her want to hold Ruby when she was sick. She replied “she made Nikki feel better so I knew she would help me too”. Whew, now that was a great moment. It means our efforts are paying off! It’s worth all the crazy questions and the stares in public (well, most of the time) to teach the next generation about diabetes. My young students aren’t afraid of Ruby the Bear because she has diabetes. Quite the opposite, they wanted the same comfort from Ruby that Nikki received at their age BECAUSE Ruby has diabetes.
My HOPE is that by the time they are old enough to really understand what diabetes is, it will be a ‘disease of the past’. AND maybe, just maybe, they will take some important life lessons and comforting childhood memories with them into adulthood. Lessons & memories instilled by a brave young girl and her stuffed bear named Ruby.
Saturday, March 17, 2012
Nikki’s 9th live-a-betes anniversary is just around the corner. This year has been a little tougher than some because of the additional diagnosis of celiac disease. I’m noticing some signs of ‘diabetes burnout’ or maybe it’s just burnout in general. As her mom, I feel pride in sharing the astounding strength I see in my child; but she is only 14 years old and has so many things going on in her young body that sometimes it all seems too much for her.
Tonight, as we were driving home from an event about 1-1/2 hours away, we had to stop for dinner. Of course, any trip or event we attend, that involves food, now means that we travel with a food kit; just in case the people we are visiting or the venue we are attending doesn’t have anything Nikki can eat. So I did have food with us, but she wanted fast food. I used my nifty new APP – GF Fast Food and it was great; BUT simply listing that hamburger patties are a gluten free choice is a little misleading. Yes, hamburger is gluten free; HOWEVER, what spices are used? Is it prepared on a grill/stove where other foods, containing gluten, have been prepared? Cross contamination is always a concern. We were discussing these matters when I noticed Nikki had gotten very quiet. This usually means she’s upset or frustrated and she’s trying not to show it. I gave her my standard “you know you will eventually tell me, so let’s talk about what’s on your mind”. Little, silent tears began running down her face. In a VERY quiet voice, she replied “I’m so tired of it all. I just want to be able to eat what I want, without thinking about 10 million things that could hurt me”. BAMMMMMM; my heart shattered into a thousand pieces. I hugged her, gave her a few minutes to work through what she was feeling, and then we regrouped and started over.
I asked her if anything sounded good. She wanted Arby’s. We stopped at the next one and went in. I gave the staff a synopsis of our situation and they were more than willing to help us – a very sweet group of people. Nikki ate roast beef, freshly prepared on a separate cooking surface, placed immediately into a plastic container and sealed for us. Then they gave us an individually wrapped fork so she could eat the roast beef. She also had potato cakes, prepared in a fryer for potato food only and a side container of cheese to dip the potato cakes in. She topped it off with a Diet Mountain Dew. NOW, you are probably thinking that it was meal loaded with carbs….nope. The only carbs were in the potato cakes. So, even though it wasn’t the healthiest meal – it was just what her heart needed……..a little comfort food. We need to make the most of these moments and find them where we can in order to avoid a full blown burnout episode.
As a mom, I HATE that I can’t take any of this away from my girl. However, I have to remember to keep these awful feelings of uselessness and heartbreak in check -- I don’t ever want to make Nikki feel like a helpless victim. We all have brief pity parties, and that’s normal. I just want to make sure I am a mom that EMPOWERS my child; not emotionally paralyzes her. Empowering her means I need to make sure: (1) I’m giving her the support SHE needs and not the support that makes ME feel good, (2) I do not become the Diabetes/Celiac Police – Nikki is quite capable of taking care of many of her own D needs and is comfortable letting me know when she needs help. She can read food labels better than most adults. She knows, for instance, that a food label stating “contains modified food starch” but doesn’t specify “modified corn starch” means she needs to check and see where (what country) the item was manufactured and ( 3) help her find ways to channel her frustration with both diseases into her art, cooking and raising diabetes/celiac awareness.
Diabetes burnout can take over your life and cause immediate and long term health complications (that is, on TOP of complications that are faced even when a T1D is obsessively vigilant about D control). 9 years ago, I faced the harsh reality that I simply cannot spare my children every monster they must and will face in their lives. This is a reality that seems to enjoy keeping me company – as if I could ever forget. Yet, a truth that is WAY more important than any monsters in our lives is what I hope to instill in both my daughters. That is: Life is full of uncertain, unfair and often scary moments and lessons. But the lessons about laughter, love, faith and victory are stronger and brighter than any monster you will face. If GOD brings you to it…he WILL bring you through it.
All for now….
Thursday, March 15, 2012
We've been through a number of pumps over the last couple of years but have found that, for Nikki, the Medtronic Mini-Med works best. Her latest Mini-Med is purple, but she still mentioned wishing it was a little 'brighter'. For Nikki that means: loud, girly, neon and PINK. Recently I was looking for skins for our cell phones and decided to see if anyone had skins for insulin pumps. Whaddaya Know!! One of my favorite places to shop for skins >>> skinit.com <<< had a fairly good variety of skins that would fit Nikki's pump. She LOVES it! It's a neon pink, zebra striped skin and fits her personality 100%.
Side note, that is Nik's hand you see in the picture and YES that is Hello Kitty painted on her thumb nail. She's such a girly girl...but then, so is her mom.
Monday, March 5, 2012
Nikki JUST NOW came to me crying and asked me to read the following news article. I couldn't wait to share it with everyone I possibly can!
ARTIFICIAL PANCREAS GIVES GIRL A VACATION FROM DIABETES
click picture to view video
'Bionic' pancreas gives patients a break
Juvenile Diabetes Research Foundation funding 13 artificial pancreas trials
In the future, the device will be the size of a cell phone, attached to a belt
Algorithms determine how much insulin and Glucagon the patient needs
Portsmouth, New Hampshire (CNN) -- At 3:30 a.m., Stefany Shaheen awoke to a feeling of uneasiness. Something was not quite right with her daughter, Elle.
Creeping into her bedroom, Shaheen removed a lancet from its wrapper and poked her diabetic daughter's finger.
Putting the blood onto the testing strip, she saw the results: dangerously low blood sugar. Shaheen woke Elle up and gave her orange juice to keep her from slipping into unconsciousness.
Shaheen was relieved her motherly intuition had told her something was wrong with Elle that night, but she wished she didn't have to rely on it. She yearned for an automatic way of knowing when Elle was dipping into a dangerously high or low blood sugar -- and not just at night, but at school, where the 12-year-old is largely responsible for monitoring her own blood sugar.
Elizabeth Cohen is a senior medical correspondent for CNN.
Then last week, Shaheen got her wish.
Elle was selected to try out an experimental device called an artificial or "bionic" pancreas. During the three-day study, Elle didn't have to poke her finger every few hours to find out her blood sugar level because the "bionic" pancreas recorded it automatically and adjusted her insulin accordingly.
Shaheen didn't have to set her alarm to wake up every three hours at night because the device was designed to catch a dangerously high or low blood sugar and treat it.
"For the first time since she was diagnosed, I didn't have to worry," says Shaheen, who lives in Portsmouth, New Hampshire.
Medical device companies are racing to be the first to market an artificial pancreas, which takes over the work of the diabetic's malfunctioning organ. The device could potentially be used for Type 1 diabetics or Type 2 diabetics who use insulin.
"It's transformative technology," says Aaron Kowalski, assistant vice president for treatment therapies research at JDRF, a research foundation for juvenile diabetes.
JDRF is funding artificial pancreas trials at 13 sites worldwide, including Yale University, Stanford University, the University of Virginia and the University of Colorado. Device companies also are funding several other studies.
Artificial pancreas a 'game changer'
"It's looking incredibly promising," Kowalski says. "I hope very much we'll have a system on the market within four years, and I'll be very disappointed if we don't."
'Pale and pasty ... and all by herself'
It was Elle who urged her mother to enroll her in an artificial pancreas study.
The Shaheens first heard about the artificial pancreas shortly after Elle was diagnosed with diabetes at age 8, but she had to be 12 years old to enroll. So the day she turned 12 this past September, she started bugging her parents.
"She was constantly reminding me, 'Mom, you need to call, you need to call,'" Shaheen remembers.
Her mother was only too happy to comply. There had been several middle-of-the-night close calls, plus some desperate situations at school where the staff nurse was responsible for 450 children and "ill-equipped," Shaheen says, to handle the needs of a diabetic child.
"I got a call from Elle one morning. She was in the school office and her voice was trembling, and she said 'Mom, I need you to come quick. I don't know what's wrong,'" Shaheen says. "I got there and her blood sugar was dropping like a rock. She was pale and pasty and sweating profusely and all by herself."
A glimpse of the dream
Elle Shaheen tests her blood sugar levels while her mother watches.
In January, Elle walked into Massachusetts General Hospital to start the trial.
Doctors fitted her for an artificial pancreas. In the future, the device will be the size of a cell phone, but for now Elle is hooked up to a laptop.
For three days, the device did the work Elle's pancreas can no longer do.
"It went very smoothly -- her blood sugar control was really very, very good," said Dr. Steven Russell, an instructor at Harvard Medical School. "We were really very pleased by what we saw with Elle."
Russell's research partner, Edward Diamano, an associate professor of biomedical engineering at Boston University, says the device learned Elle's blood sugar patterns and made changes accordingly.
"It's making adjustments every five minutes," he says.
For that one weekend, Elle didn't have to draw blood, and she could eat foods she hadn't eaten in large quantities for four years.
"She ate Spaghetti-O's and grilled cheese and french fries and hamburgers," Shaheen says. "She ate between 67 and 100 grams of carbs [every meal], and usually she can only eat between 40 and 50."
Then, after the experiment, Elle had to leave the artificial pancreas behind, and it was back to counting carbs and poking herself every couple of hours. Her mother reset the nighttime alarm clock.
"We're extraordinarily impatient for access to the device," Shaheen says. "I think it will revolutionize the way she lives."
"That was really hard," Elle says. "I just hope one day I can use it at home."
I think it will revolutionize the way she lives.
Last week, Russell and Damiano visited the Food and Drug Administration offices in Silver Spring, Maryland, to show regulators a prototype for the artificial pancreas.
The device itself can be worn in a pocket or clipped to a belt. Two tiny pieces go under the skin, one to detect glucose levels in the blood and another to deliver insulin and glucagon, a drug used to raise very low blood sugar.
Algorithms determine how much insulin and Glucagon the patient needs, and if necessary the patient can manually override the device.
So far, the FDA has required doctors to keep patients inside the hospital while their using the device.
The potential benefits are enormous, Dr. Charles Zimliki, who chairs the FDA's Artificial Pancreas Critical Path Initiative, testified before a Senate committee last year. But "if not properly designed, use of an artificial pancreas device in an outpatient setting can place patients at significant risk."
Russell said he hopes that by the fall, the FDA will give him permission to allow adult diabetic patients to leave the building and walk the grounds of the Massachusetts General Hospital campus accompanied by a nurse, eating as they like and using the hospital's gym.
Then by the summer of 2013, he hopes to give the artificial pancreas to children attending a summer camp.
"These are all baby steps towards what we ultimately want to do, which is give them the device and say, 'Go home and check back with us in a week,'" Russell says.
Shaheen is closely watching the proceedings at the FDA, with the help of her mother, Sen. Jeanne Shaheen, D-New Hampshire, who co-chairs the Senate Diabetes Caucus.
"We're extraordinarily impatient for access to the device," she says. "I think it will revolutionize the way she lives."
Friday, March 2, 2012 turned out to be one of the scariest days of my life. It was a day that altered the lives of several friends, as well as hundreds of people in my community. At approximately 4:00p.m. an EF4 tornado, with wind speeds up to 175 miles per hour and over a mile wide destroyed homes, property and claimed 4 lives in Piner, Kentucky (according to the NWS).
I've been contemplating what I wanted to say in this update, but I quite honestly have so many things I COULD say that it would probably wind up sounding like an incomprehensible string of words. Instead I'll simply share a couple stories; experienced by friends or myself.
A dear friend of mine's sister lost her home to the tornado. After a harrowing experience living through the tornado that took their home -- and the oxygen from the air while turning it a literal GREEN -- the family awoke the next morning faced with the task of cleaning up and rebuilding. People began showing up from everywhere to help the family burn the shredded wood that was once their home. As the day went on, my friend (Karen) noticed a man that she was unfamliar with. He worked side by side from early morning until late in the evening with family and friends. Family members began to notice that none of them seemed to know who he was. Finally, at the end of the evening, Karen stopped the man and asked him if he was a friend of her brother-in-law. He replied "no, I don't know anyone here". Touched by this news, Karen thanked him for coming to help. His reply? He didn't want her to thank him. He said he had been helped by strangers after a natural disaster and he was doing what he could to pay-it-forward. He was a survivor of Katrina.
I've spent time this week doing what little bit I could to help; which was a drop in the bucket compared to what I've seen so many others doing. Early in the week I assisted in the sorting of the unbelievable amount of donations at our local middle school. As survivors came in, they were consistently overwhelmed at the sheer volume of items that were donated. At the same time, HAVING to be there seemed to (re)drive home their loss. I saw, and experienced, as many hugs and backslaps being handed out as I did supplies. I saw the faces of young children break into a smile at the site of the brand new toys they were able to choose from: when you're a kid and every toy you own is suddenly 'blown away' it's a very big deal. I watched a Principal, Assistant Principal, teachers from the school - and schools close by - shed tears over what their neighbors, family, friends, co-workers and students were facing. I watched the young soldier-students from the Success Academy walk into the staging area with purpose, go up to the closest adult and say "what do you need me to do, how can I help". I saw a community come together, lift each other up and find grace in the most unexpected places. I am truly proud to be able to say that this is MY community.
I, along with friends, also had the amazing opportunity to deliver meals to volunteers and tornado victims at actual tornado sites in some of the hardest hit areas. There are simply no words to describe that level of destruction. Yet, what I will remember for the rest of my life is the courage, bravery and sweet spirit of the residents of Piner, Kentucky. My friends and I spent some time on 2 different days with an amazing lady named Judy. She was actually caught outside in the tornado - attempting to get to shelter with her neighbor. It threw her down the street. She managed to hang on to her precious cats -- which she was carrying in a pet taxi. As she attempted to get to her dog, who was still tethered to his dog house, the tornado picked up the dog and dog house and threw both high up into a tree. Judy was fighting for her own survival and could only watch. Before she made it to the shelter of her other neighbor's basement, her dog's chain broke and he fell to the ground.....unharmed -- no broken bones, not even a scratch.
When we stopped by to check on Judy and bring her dinner this evening, she rushed over to us to tell us that her last 'baby' came home this morning. Jerry the cat arrived out of nowhere, with only a few minor scratches on his nose and eye. Judy continually thanked people for caring and talked about how she's been blessed throughout this tragedy. No matter where I go or how many years pass, I will never forget her.
I've included some pictures from tornado sites. I wrestled with the decision to post them. However, I believe what these courageous people are facing; and the dignity and survival spirit with which they face it deserves to be shared.
I've had one or two friends question my belief that GOD's grace has been at work through all of this because not everyone survived. To that I've answered with a quote from Max Lucado: When we face struggles, we often wonder WHY. Years from now, though, we may realize it was those struggles that taught us something we couldn't have otherwise learned --- that there was purpose to our pain. REMEMBER, the same GOD that guided his son through death and back to life said he would never leave us. HE is right there with you.
Please continue praying for the families of all the people touched by the tornadoes on March 2.
**The pictures you see in this post were taken by myself, as well as friends and tornado survivors**
Sunday, February 26, 2012
As the parent of a T1 who is winding up her 8th "live-a-betes" year (that's diabetes language for: she's had T1 for almost 9 years and she's only 14), I KNOW all the statistics regarding the cost of living with this disease. People living with the disease have medical expenses at a rate that's two times higher than for those living without it. In 2007, U.S. citizens spent a combined 174 BILLION dollars on medical expenses - directly and indirectly related to diabetes.
This year we have simply been blown out of the water with medical bills -- and we have great insurance! It's one thing to read the stats and shake your head, and another thing COMPLETELY to realize that your family of 4 people has spent a total, out-of-pocket, of $13,000 on medical bills in ONE YEAR. 92%of that cost was due to T1 and our newest addition, Celiac Disease.
As if that's not enough of a financial hit, we had to PAY the federal government $52 in federal taxes because we supposedly just make too much money. Oh really? I suppose I'm driving a 13 year old car because I love it so much I can't part with it. I'm just so dang angry. I believe the majority of my anger comes from the fact that I know one day all these bills will - technically - be Nikki's responsibilty and that just stinks. Of course, we will never not be her partners in this fight -- financially and emotionally; but if I needed another reason to get remotivated on fundraising and education efforts, this was it.
Hoping, praying and demanding a cure!
These last few weeks have been crazy busy, which is probably my 'normal' and I just don't realize it. However, I must have been way more tired than I realized. I sat down "for a few minutes" last night around 6:30 p.m. and when I woke up it was 10:00 a.m. SATURDAY MORNING. Talk about being discombobulated - hee hee. I suffer from insomnia or rather my brain has no 'off' switch; Because of this, I can honestly say I don't remember ever sleeping that many hours straight in my entire life. I have to add that I can't say I now feel refreshed and ready to go; just completely out of sorts. So maybe insomnia has its perks?
It is now midnight (however it IS the weekend) and I feel WIDE AWAKE....why not blog. Nikki's blood sugars have been fairly great and we've had no celiac issues; both things are reasons to happy dance. I also have a new obsession; Pinterest. It's been an amazing site for T1 support and gluten free food ideas. I'm totally hooked and recommend checking it out. A friend of mine described it as a "mini vacation for your brain" and I totally agree with her.
In fact, I think Pinterest sounds like a good idea; I'll make it my next stop this evening. All for now.
Tuesday, February 21, 2012
Just a quick update because I needed another opportunity to show off my beautiful 'baby' girl. Nikki's 8th grade formal was last Friday and I'm happy to say that she was feeling great and had wonderful blood sugar numbers for the whole weekend!
Nikki loves any and every opportunity to get dressed up, so she more than enjoyed the process of getting ready for the dance. I got a kick out of big sister Amber, because she was full of advice and compliments for her little sister; and I think she was like the rest of us -- a little shocked that Nikki isn't really 'our baby' any more.
I am happy to report that I did not 'cellphone stalk' (that is: repeatedly text Nikki throughout the night to make sure everything was okay).....I did it through Amber (that is: I made Amber text her repeatedly). Of course, they both caught on to this tactic rather early and I was given the -- very firm -- message "tell mom to stop worrying". So I ceased. It's a good thing my girls know I'm crazy and allow me to be me -- to a point, of course.
Thursday, February 16, 2012
14 years ago today I gave birth to one of the most precious, amazing gifts I've ever been given. Nikki Marie Turner arrived on February 16, 1998 at 1:19 p.m. We called her our 'smiley baby' because she was, well, always smiling. That sweet spirit has grown and become stronger & brighter along with her; in spite of T1 and Celiac Disease -- and all the 'stuff' that goes along with both of those.
As I've mentioned before, Nikki is a blooming artist. I decided this was the perfect time to have one of her designs placed permanently on my wrist. It will serve as a constant reminder of all she faces every day; and of her bravery and shining spirit. I also hope it opens doors, allowing many opportunities to educate others about T1 and Celiac.
Happy Birthday Nikki Mouse. You are my baby girl and my hero. I love you.
Tuesday, February 14, 2012
Nikki has been at home sick with a virus for the last 2 days. Its been harder for her to shake because her blood sugars have been crazy high. Nikki has some pretty important events going on this week, so she is understandably frustrated with T1.
I walked into my bedroom tonight and found this sketch -- drawn by Nikki. She doesn't feel sorry for herself because of T1 OR celiac; and she rarely complains. This sketch really made me catch my breath. It describes her feelings of being held captive by these diseases AND describes her hopes for her future (& everyone else on the same journey). It shows a Phoenix rising from the ashes. However, in this case the 'ashes' its rising from is a mixture of needles, blood and tubing.
I looked up "released" and here is how Webster's defines the word:
(1) to set free from restraint, confinement, or servitude
(2) to relieve from something that confines, burdens, or oppresses
I don't think I need to add anything more.
GOD Bless My Mouse.