Archive | May 2012

My Diabetes Hero…Diabetes Blog Week

“Let’s end our week on a high note and blog about our “Diabetes Hero”. It can be anyone you’d like to recognize or admire, someone you know personally or not, someone with diabetes or maybe a Type 3. It might be a fabulous endo or CDE. It could be a d-celebrity or role-model. It could be another DOC member. It’s up to you – who is your Diabetes Hero??”

Diabetes Hero…Diabetes Blog Week

I have had a hard time thinking about who this would be.  I could label many people in my life as my ‘D-Hero’.  For starterts, to name a few, my Hubbs…he puts up with me and my ‘D’ duties and always tells me he loves what I do and admires me (to help encourage me along the way). He never gives up on me or gets fed up with me.  He knows I take this job seriously, and knows the importance of it.  Then I think about ALL the families surrounding us.  There are COUNTLESS…literally, we are surrounded by an amazing network of friends and family.  To all my church family, you have continued to lift us and be there for us. No one has even had to ask.  You are great examples of charity at its finest (too many to name, but I think about you all every day, you have in a major way made getting our D.A.D possible).  Friends I went to high school with and had lost a little bit of contact with have totally stepped up with donations, encouragement, and empathy. (Michelle, Angie, Steph, Daniel, Jennifer, Jessica and so many more).  I am lucky! (again, helping us on our journey not only into type 1 but on our way to get a D.A.D).  My Nursing School family/friends; they were on a long journey with me and become a huge part of my life through school, and our ties didn’t stop there.  I couldn’t thank you all enough. My friends all around me, continue to help out, cry with me, laugh with me, and encourage us to do what we need to do.  They understand why our life has changed and do not expect us to be exactly life we were before ‘D’.  It’s nice not to have that pressure. (Josey, Ethan,Tannah, Sharisa…just to name a few).  And the many other friends who have been there with calls, prayers, thoughts, encouragement. Our wonderful medical team, we have been so lucky to have this team of amazing women who really have defined how every healthcare professional should approach their job.  They step up to the plate and go above and beyond.  I love them, appreciate them, see their hard work and love they put into their jobs.  No way I could do what I do without them. I wish every family with a chronic illness has the amazing support network we do.  We are the luckiest people in the world.

I have so many people to name…and I KNOW I am leaving out so so so many. I am not doing it on purpose, feel overwhelmed and there are countless of you.  So IF I haven’t mentioned you, know, I too, think of you often. I have become closer to so many people in my life in an odd way.  Maxwell’s, Wait’s, Finch’s, Manolli’s, Young’s, Lee’s, Tucker’s, (I know there are more…If I had more time to sit and make a list, it would be enormous.  So many people deserve a mention insert your name here, you count too); I love you all and you have gone above and beyond helping this mother achieve the impossible.  Your support hasn’t gone unnoticed.  I love you.

Both Kinzie’s and Jared’s teachers from this year have been so amazing.  WOW. You love your job, your kids, and what you do even on the bad days.  I cannot thank you enough for loving my children, seeing their struggles and continually thinking of them, encouraging them, giving them an opportunity to be themselves and having a safe place.  You set that standard high.  I thank you for every day, minute, second you think about my children, what you have taught them, and the examples you have set.  We will miss you dearly. Alongside your own struggles, you continued to put the kids first. Thanks, from the bottom of my heart, thank you.

To all of Kinzie’s friends; thank you.  Every day I have prayed that she be surrounded by strong, amazing, loving examples; and she has been. There are so many of you, and I am sure I cannot remember all of your names…you know who you are.  Rachel, Breanne, Teagan, her dance team-mates, her cousins, Mary,  everyone!  Since the beginning, she is missed when she is gone and embraced when she is present. You love her for who she is, you do not judge her or make her feel funny when she has to take care of her body.  You watch over her and help he stay safe.  You have never made fun of her, laughed at her or teased her.  What an amazing group of people you are.  You surround her and help her live her life and you never hesitate to make her feel better when she is down.  I love you all (and your parents, good job on bringing up amazing children). She has countless numbers of friends; and you brighten her life.  She misses you when she doesn’t see you.

Kinzie’s dance team…I have to take a few sentences to tell you that you help her. She feel 100% accepted and loved.  Dance is Kinzie’s passion and without it, I do not know how she would do it without you all.  Every single one of you make a difference.  When she is low and sits out, you all embrace it.  You ask questions, you want to learn, you love her.  I cannot thank you enough. Her coaches…she feels ‘normal’ at dance despite the highs and lows.  She is devastated when she cannot go, and she loves you beyond words.  You have provided such an amazing positive safe environment. You do what you do because of your passion and it has completely worn off on Kinzie.  I can see her entire face light up when she dances and the weight of the world just disappears.  Amazing.  Leaves me speechless every single time.

My daughter’s best friend, McKinzie…I know I have mentioned the family, but I feel the need to let her know how much we love her.  How much we thank you all for being you and accepting our trial as part of your own. I wish every diabetic child has a friend like you and a family behind them like your family. The LATE night play dates, the rescuing, and the loving.  We are very blessed indeed.  We have loved you McKinzie from day one; but you continue to amaze us.  You have so much compassion and love in your tiny body.  This isn’t just Kinzie’s disease, you treat it like you share it.  You try to carry so much of Kinzie’s load.  You lift her up, help her on bad days, you always watch out for her (and when you notice a change you let someone know). You are pretty amazing.

My sister Crystal, you are always at my side.  You have never left it.  You have refused for this journey not to include you.  You go above and beyond.  You have asked to learn about T1D from day 1 so you could properly care for Kinzie…you are the busiest person…and yet, you continue to learn with us and keep up with our changes so that Kinzie has someone who knows what to do (like, REALLY knows) when I cannot be there.  Do you know how amazing that is? You see the small things Kinzie achieves and get what HUGE milestones they are.  You love her. You were there for the rescue and stayed for the journey.  I love you.  You have always been my best friend since I was born (lucky you!) and I know it is for a reason.  Your family right there as well.  I love you all.  My  sister Lacie, oh, this change in our life has made the miles between us seem so much longer.  I miss you so much. Some days I wish you were next door like everyone else. You are always there, even though you are so far away. I can’t thank you enough for the phone calls when you know we are struggling or when you know Kinz is having a rough/sick day.  You are always there, I can call you, write you, text you, and you are always there.  You have completely stepped up and helped me carry a lot of this trial, and you didn’t have to.  I love you, and I am so thankful to have you as a sister, and wonder why we waited so many years to get this close…we missed out on some great years! Your continuous thoughts, how you help fight this with me, you continue to inspire me and encourage me. No matter how ridiculous my thoughts and ideas are, you support me/us.  You help carry our pain, you laugh when we do and celebrate the small steps with us. My little sister Carmen, my how much you have grown-up.  I love you so much and the example you are to my children.  Kinzie has adored you from day one, and with her diagnosis, you stepped up.  Always loving, awesome, fun, you accept her for it and help her keep going.  You are young, newly married with so many changes in your life you have to adjust to…and yet, you continue to think about Kinz. You can see beyond your own struggles and life changes.  You are simply amazing.  My parents, you cry when I cry, you laugh when I laugh…hasn’t been the easiest thing to watch I am sure.  You know when we are in pain, when we celebrate.  I couldn’t imagine (well, I can, I have to) watching your family and not being able to do the role you have done for years as parents and grandparents…you cannot ‘fix’ the hurt or destruction you see.  I am surrounded by amazing family/parents/siblings.  All of you are great! You have all helped in specific ways that were needed even when we couldn’t tell you what it was we needed. My aunts, you have all been pretty supportive, excited when we meet milestones, and put on a brave face when I need one…Brenda, Sheri, Jeri, Nae. Thank you.

Most of all in this post I want to talk about my children. You are my heroes on a daily basis.  Oh, if I could only fix everything I would in a heart beat. I love you beyond the capacity of love; I can never tell you how much I love you and how much I wish I could give you a better life…one without pain, troubles, or even just give you back life before T1D.  I can’t, so know every day that I strive to do the best for you all.  I think about you every single minute of every single day and what I can do better, what more I can do to take your burden or carry the load.  You are my heroes because you are simply magnificent.  The way you handle everything is inspiring. Chloe and Mason, you make us smile during the scary moments, you help us celebrate during our triumphs and make this family a complete whole always knowing our needs and being amazing little kids.  Jared, your life has changed so much and yet you refuse to stand still and let everyone around you worry.  You are your sister’s keeper and the most amazing steadfast job at that task.  Kinzie could never ask for a more amazing brother and I could never ask for a more amazing son.  You have a heart of gold.  You make me smile.  I am sorry that some days you do not know how to deal with everything.  I am sorry you have to watch your sister go through this and you do not know how to process it at times.  I am sorry that you have to grow up so fast and be a part of a reality that many people do not even as adults.  Remember, you are the most amazing young man.  You are wise beyond your years.  Kinzie. You. Are. Simply. Awe-Inspiring.  If I could give you my pancreas and take this disease from you, I would in a heartbeat. I have cried so many tears (good and bad) watching what you do, worrying about you, and how you refuse to quit. You have such a light about you.  Every morning you wake up, well, I cannot describe it, but those are the most amazing moments…making through even one more night. You are strong, you are smart, you are life-loving, you are special.  I see the fight you put on every single day and am completely amazed at everything you do and how you do it.  You can take care of yourself, from day one, you took on that task.  You deal with such grown-up emotions and I am sorry you have to.  You fight this epic battle and in the end, I KNOW you will win.  The small battles you win make me completely speechless.  The things you tackle and the strength and endurance you have are beyond humanly possible. You have become this force of energy refusing not to try to you push yourself.  Some days I step back and wonder how lucky I am to have such strong, beautiful, amazing, brilliant spirits as children (well, everyday).  I cannot take the credit for who you are, there is no way that came from me.  I see everything that you do, and know that every day you are all my heroes.  You do it all so gracefully and without hesitation.  Never has there been a more proud mom.  You make me want to be a better mother, example, human.  I love you so much. I know this journey is happening for a reason, and perhaps part of that reason is because of the power you have within yourselves and you can do great things here on earth.  Today, and all other days, know that you are the most amazing heroes that were ever to exist.  You are my Super Heroes, better than the movies.  What you do is real; how you do it is beyond impressive.  You are pillars of lights, balls of energy and in every way I think you are amazing.

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Saturday Snapshot…Diabetes Blog Week

“Back for the third year, let’s show everyone what life with diabetes looks like!  With a nod to the Diabetes 365 project, let’s grab our cameras again and share some more d-related pictures.  Post as many or as few as you’d like.  Feel free to blog your thoughts on or explanations of your pictures, or leave out the written words and let the pictures speak for themselves.”

 What a difference a year and a half can make!

(Right) Diagnosis. Lost 15 pounds, age 10, wore size 6 clothes, (and still one physician blew me off, repeating nothing was wrong).  Beginning stages of DKA, feeling terrible (in tears), and yet she smiles.

(Left) Kinzie 1 1/2 years later…and loves to live life.Dance is her passion. Doing a Stall in her Hip Hop photo

 

We love (more than anything) to have good numbers…but have learned to deal with the bad, emergenices and all it entails…

Low from today 48, still a smile drinkingjuice; putting the day on hold until her BG comes up

Woohoo!

glucagon kit love

iheart my pump

supplies

We cannot wait for our Diabetic Alert Dog to come into our home.

It will be another FANTASTIC tool we are blessed to haveto help fight the good fight and live life to the fullest.

 

In the end…what we have is great hope.

What they should know…Friday. Diabetes Blog Week

What they should know…Friday.

And of course typing this title already starts the tears.

There are so many things I wish people knew. Starting with myself. If only I could have written my future self a letter about our journey before we got to this place, it would have been so much easier. So here is a letter from this mother’s heart.

Dear you,

You may not know this yet, but the journey you will face may be the hardest journey you could imagine.  You will be stretched beyond your limits and drug deep into despair at many moments.  But, do not fear, you will never be ALONE. You can do this, one step at a time.

Know that for every second you have to hold your breath, fearing for your daughter’s life…that another second awaits you for cheer and triumph. Know that when you feel completely over-whelmed, there will always be at least 3 people waiting to lift you up and continue on right next to you. Know that no matter what you face, in the end, there is always a reason for it.  Do not wait for that reason to show before you begin to live again…you must stay strong, and carry on.

You will be plagued with guilt and grief about things you wish you were better at, things you wish received more focus, and things you would love to change…but know that this is normal. You are human, and that you can do what ever it is you need to do in order to win this battle and your family will be backing you 100%.

Know that you can never say thank you, I love you, or I need you enough.  Those words will become a part of your soul.

Know that as you continue down this road, you will need to lead, guide, teach, tackle, side-step, educate many people all around and you need to be brave enough to do so at any given moment.

Even though you never thought the words ‘being a full-time pancreas’ could ever show up on your resume, remember it deserves a highlighted spot in your life resume…it isn’t easy, there isn’t a guide line, and no way to always be right; but it is your job-so do it, and do it to the best of your abilities.  Always learn.  Always love.  Always support.  Always give.  Always receive.

You will have to ask for help and accept help.  Guess what?  It will not kill you! It isn’t quite as bad as you once thought it was, although it does come with a big gulp of humanity and humble you quicker than you ever thought humanly imaginable. And that is okay, you need it.

Love,

Yourself from the other side of the journey.

 

Something I want others to know…

We didn’t choose this.  There is no CURE, no way to PREVENT, and it takes more lives than cancer and heart disease.  Diabetes is a very serious illness.  Type 1 diabetes only makes up (roughly) 5% of diagnosed diabetes cases…so of course, a lot of focus is on the larger spectrum, which is understandable, but I do fear that not educating about type 1 can be deadly and creates a huge whole in my heart, making our T1D battle a hard one to face.  Without insulin a type 1 diabetic absolutely CANNOT LIVE. Their body is attacking their insulin making cells inside their pancreas, hence them not having insulin.  No pill can be taken to replace insulin because the acids in your stomach destroy it before you can use it…it is done only by injection…multiple injections daily. Death can occur prior to diagnosis because it is overlooked…follow your instinct and intuition. Weight loss, irritability, frequent urination, frequent thirst, fruity breath and urine, lethargy, sweating, shakiness…and so much more.  Learn these signs, embrace them, and when in doubt test!!! Yes! You too can get a glucometer anywhere on your own and even go to the physician and REQUEST to have testing done.

I wish everyone knew the struggles that can go along with an invisible disease.  Aside from seeing Kinzie test her blood glucose and seeing her pump infusion sight, she is happy, bright, playful, loving, smart, funny, silly girl.  She LOOKS normal and we often times forget the battle she is fighting literally every second of every single day/night.  Diabetes doesn’t rest, quit, go away, give up, leave…it is always there, always changing, always harming.  It is there and we cannot change that fact.

I wish everyone knew that being a sibling to a T1D is hard, and can be a tough job.  It weighs heavily on them and affects them too.

I/we don’t really sleep…so if I bite your head off, you have wither caught me on a series of sleepless nights and I am near the end of my reserve (and I am sorry about that)…or I am just plain mad.  I am not shy to correct or educate anyone about T1D.  I have been an advocate for my children since the day I became pregnant with them…I will be one until the day I die.  Being an advocate for T1D is a must for me…why would I not be?  How could I not be?

Please know, it isn’t as easy as just letting Kinzie go to your party or house like every other child can do.  It is about saving her life, playing pancreas since her pancreas doesn’t work…it is about keeping her alive every second and knowing how to save her life when needed (as, it has come up and will again).  We do not have the pleasure to do any activity without planning and preparing.  If you want to have Kinzie around, you simply have to learn how to keep her alive, signs to watch for, and what to do in emergencies.  Is that a huge task? Yes! Absolutely! Do I expect everyone to step up to that plate and blame them if they do not? No, never! It can be daunting, hard, scary, and I know it isn’t possible for everyone.  So please, do not feel offended when I simply do not let her go. Because actually, her life depends on me being that RESPONSIBLE, and so I will continue to be this way, no amount of time will ever change that.  And thank you for respecting that.

Yes, Kinzie can eat ANYTHING! BUT, we test before, after, and any time in between because that is how we keep her healthy. Her diet is what any other HEALTHY human beings should be…a healthy well-balanced diet. No matter what she consumes, she has to cover with insulin. Whether it be a cupcake or a sandwich…there are a few ‘unlimited’ or ‘free’ as we call them in our home that she doesn’t have to cover for, but we still test before consuming them.  SUGAR FREE HAS NOTHING TO DO WITH T1D!!!!!!!!!! So stop, for the love of all things educated, stop saying and thinking that! THINK carbs!!! We count carbs!!! Look for healthy carbs, or at least count the carbs in things you offer her.  If you do not know how, we do!!!! And we do not mind doing it, what we do mind is not covering her carbs or not encouraging her to check her blood glucose before she consumes anything, or if something seems ‘off’. So do not hand her a sugar-free candy and everyone else a cupcake…or do not hand her the same thing as everyone else and wonder why she isn’t eating it (probably because she knows she must test before she eats ANYTHING and doesn’t feel comfortable in her given environment…so welcome those tests, welcome T1D, be thoughtful but don’t make it the focus. Let her feel safe and welcomed as is!) We dose for carbs…but we cannot go carb free! It isn’t that easy, that would bring starvation ketones which are poison to her body.

It isn’t as easy as dropping Kinzie off at school or practices.  We do not get that luxury.  Yes, it is that serious.  Yes, she can die.  Every single thing affects her blood glucose.  Hormones, weather, stress, emotions, illnesses, environments…you name it, it affects it and we have to take an educated guess how to dose/cover/change for it.

BUT, know that Kinzie can do ANYTHING and EVERYTHING…we just have to put in a little extra work to keep her safe and healthy in order to do so.

I wish you knew when I kiss her good-bye, when I say a prayer for her (and my other kids) safety and health…I mean it as if it were my last words.  Saying ‘good-by’ as she leaves even for a play-date or practice weighs on my heart, because I will never know what her body will do when I am not around. I never know if that kiss, hug, prayer will be my last and I do not ever want to regret not giving one. It is different being a parent to a type 1 diabetic child, it can be scary, and the possibilities never rest. I fear the day I am not around and an emergency arises…that is why I am picky and choosy as to who is around her.  You have to be on high alert, you have to be educated, and you have to be willing.

I wish you knew the feelings that take place in our darkest moments, our reality.  I wish I could describe my deepest fears and do them justice. In our darkest moments, we feel beyond defeated and sometimes so full of fear that it hurts in every single way.  Watching my child get hit with extreme highs that makes her entire body ache, her ability to think is altered, and poison just sitting there….well, watching that alone just absolutely sucks, no mother would ever want to see this.  And witnessing the extreme lows completely sucks in every single way possible.  Watching your child shut down, literally, her body shutting down kills you.  It completely brings your biggest fear knocking on your front door.  You cannot ignore it; you cannot run from it…your biggest fear is a reality, and daily that reality plagues you.  But you have to move on.

I wish you knew the burdens T1D can bring.  Financial, marital, spiritual, emotional, physical…it can and does wear on every aspect in your life.

I wish you knew that the life I/we lived before does not; it will not ever exist again. Our life has changed, we have changed…so do not think it is because of you.  It is out of necessity.

I wish you knew that I do not care how many times you roll your eyes when I bring up T1D, because for me, it is therapy, it is a way to continue fighting, it is being an advocate, it is doing my job.  So no matter how much you get sick of hearing about it, I wish you knew that I get sick of living with it, but cannot change that so I will change the world.

I wish you knew the impact one person can have on Kinzie’s day.  One person advocating for her, one person taking time to understand her life, one person not pitying her, but learning because of her…well, it’s priceless.

I wish you knew that sometimes we need to cry…sometimes we just need to let it out.  And Kinzie needs a safe place to do just that. Where it is allowed and she can do it safely while still respecting her body’s needs.

I wish you knew that being silent hurts more than being afraid to say the wrong thing.  I wish you knew how much being an advocate for us means to us.  I wish you knew how much you can help…how much just one person joining in can help.

I wish you knew how much I appreciate all of ‘Kinzie’s Krusaders’ and all of the help, love, and support we receive.  I wish someone could stand in my shoes for one moment to experience those small miracles and tender mercies we have been so blessed to receive.  It can be a pretty amazing sight, and pretty over-whelming at times.  I wish you knew how much we love you.

 

Calling Mr. Fix-It…who ever you may be!

Ever have the feeling of being completely out of control?  No matter how hard you try to control, fix, help, learn; you just NEVER can quite get there? You never master that aspect, and ultimately feel an overwhelming sense of guilt in the end that you do not have enough control to make things easier?

I wish I knew how to fix everything, every emotion, every negative coping skill, every negative thought…I wish I knew how to take all that pain, guilt, and struggle away from my kids (well, from my family).  It has to be one of the hardest things to deal with facing T1D (besides the reality that it can take her life and takes a major toll on her poor body).  I seriously want to be able to shield them so badly from that reality, and no matter how hard I try it creeps in on us and takes our breath away at random moments.

I hate that.  I can honestly say I completely and utterly hate that about T1D.  I can see internal struggles going on and off within Kinzie and Jared and I never know exactly how to ‘fix’ it, other than to tell them it is okay, they are safe and can talk to me about anything.  I try to always validate their feelings and allow them to know that it is okay, it is normal.  Heck, I hate Diabetes some days too!

We have been in a whirlwind on and off for a few months.  We have had many blessings, miracles, and triumphs…shadowed by sadness, chaos, and sometimes just nasty downers.  Kinzie and Jared have both had their fair share of ‘I hate diabetes and what it does’ days and lately I am a little worried.  I do not want them to feel overwhelmed with their emotions and not know how to handle them in a positive way.  I don’t want them to rely on negative coping skills or be afraid to talk about how they feel (I have suffered from that mentality for a long, long time, and it just doesn’t make anything better).

So last week we had 2 crashes (one of which was pretty darn emergent and took everyone’s breath away).  I can see each of the kids processing it differently and the reality from it hitting them at different times and different ways.  I can see it hitting my extended family as well.  I want to take that away.  I want to carry that burden and think it completely sucks that they all have to have that to process and deal with.

Kinzie has been a bit ‘feisty’ this past week…I was hoping for it to just be BG out of whack, recuperating from a nasty week…etc.  But alas, today we got to the root of it.

All in one swift conversation between Kinz and I,  a complete and total emotional break down was in full force.  She once again hit her limit and her emotions had nowhere to go other than out.  My heart sank when through tears she managed to let out the words “I just don’t want diabetes. I don’t always feel safe without you.”  (Because, well, I don’t want her to have it either and I don’t get that option.  I can’t fix this). My heart broke, I hurt for her…I wanted to make it all better, I wanted to take that burden from her.

<*Insert great Best Friend to the rescue moment here* Kinzie’s BFF and her mom came over to be with her while I had to pick the boys up from school. We are lucky to have wonderful people surround us.  Without hesitation they were there!>

All I could muster out was “I don’t want you to have it either, but we cannot change this.  I know I am thankful we have diabetes and not an incurable cancer…because with diabetes we can LIVE.  We have been given many tools to help us fight this disease and every day there are amazing ideas being inspired and born by many people to help improve treatment of diabetes. Like your dog! We are so excited for your dog and it is another amazing tool that was inspired, another tool we can use.” I then told her that her dad and I were led down certain paths to have the knowledge to keep her healthy; and even when she can’t help herself we will always know how to help her.  My poor kid, I don’t like how she has to deal with such ‘grown-up’ emotions and realities.

I guess that is my internal struggle the past week or so…taken aback with our BG crash.  It was a reality check in complete full force.

So today our conclusion is: 1. We are thankful for the tools we do have/will have to fight.  2. We are never given more than we can handle.  3. It is okay to be sad, angry and mad. (Bottling it in doesn’t help). 4.  Being proactive and advocating makes us feel better; like we might be making a difference for someone else.

Then our plan was born: A family home evening with friends and family; BBQ blowout. Next week Kinzie and I will plan and organize a BBQ to put together and a presentation with information on type 1 diabetes, signs to look for when you are around her.  What to do in emergencies and how to deliver glucagon shot (hello expired glucagon and oranges!)  Making sure those around us are better prepared and she always feels safe. This will be part of our curriculum next week. Kinzie walked away from my lap with a smile on her face and ideas already forming. It didn’t solve everything, but I am hoping she walked away knowing that I hear her and she sees that putting her energy into something positive can always help her release any negative energy that she doesn’t know what to do with.

I can only pray that I say and do the right things at the right times for my family. I hope I am able to remain vigilant (perhaps more vigilant) and recognize when they are struggling. One day it will all make sense.

Fantasy Device Thursday…Diabetes Blog Week

Fantasy Device…Thursday.

Oh, to dream in a perfect world.  I can think of a few ‘wish-list’ items.  Perhaps a tool that can ACCURATELY and SAFELY test BG, adjust insulin needs to food/activity automatically without human adjustment, excrete hormones needed to avoid extreme highs/lows, no tubes, pokes or prods…oh wait that would be a brand new spanking new pancreas! I would love for CGMs to be less cumbersome, a little more accurate, and have the ability to take over FSBS without error or calibration.  I think an all-in-one (artificial pancreas) that is error free, sturdy, tube-less, dependable machine that does all the thinking on its own and is AFFORDABLE and AVAILABLE for every one.

Perhaps something that could reverse the effects of T1D…something that can stop damage dead in its tracks and revive the pancreas as well. (Is that too much to ask for?)

I am sure I can think of many more wish-list items…but I am hitting a wall.  I am sure it has nothing to do with a sleepless night.

In a perfect world, I would be satisfied to never have another diagnosis of T1D, my heart breaks with each family as they receive that diagnosis and it hits me like a ton of bricks; and a way to completely cure and prevent it (isn’t that the hearts’ desire of every T1D parent?).

Diabetes Blog Week — Something good to eat wild card…Andes Mint Chocolate Cupcakes

“Inspired by DFeast Fridays share a favorite recipe with us.  It can be healthy, or it can be a yummy indulgence.  Extra points if you can include carb counts and other nutrition info!!  If it’s not an original recipe, be sure to properly credit your source”

So I am opting to go with something horribly sweet and full of carbs…simply because, this happens to be one of Kinzie’s favorite things to make (and she loves how they taste too!) She considers becoming a baker (and a vet, and a scientist, and a doctor, and a dance teacher)…for a career.  (You see, T1d’ers can indulge in a little sweet as well…it’s all in the planning)

You can check out the link to the recipe we found here.  We found this recipe on *gulp* pinterest and it has quickly become a favorite to make for special occasions.  (GUILTY!) Kinzie, right now, loves to cook and bake.  And she does a great job at it too! We recently had a bake sale to raise money for her Diabetic Alert Dog fund, and this is one recipe she baked on her own to contribute (she made well over 100 cupcakes on her own in one night/day).  They were a hit!  So when she had her yard sale, a group of young men volunteered their time to help set up and organize this major event (by major, I mean weeks’ worth or solid work and organization for many volunteers from sun up to sun down).  When she heard that same group of young men were doing a fundraiser (cake auction) to go to scout camp, she started baking to donate to their auction.  This recipe, of course was the first on her list and were a hit at the cake auction.

One Thing To Improve, Wednesday–Diabetes Blog Week

One thing to improve…Wednesday.

Oy! Where do I start? One thing?! Impossible! I can give you an ongoing list.  One thing perhaps is my controlling…but then I struggle wanting to completely change it all the way because it keeps us going.  Our personalities here…if I do not take control, we wouldn’t have the structure or guidelines we do to fight this disease.  So maybe I want to tweak it, a bit…see controlling part already taking control of that thought!

I feel like a failure, often, when it comes to spending quality time with everyone around me not consumed in T1D….my children (Kinz, Jer, Chlo, Mason), my husband, my sisters, my nieces and nephews, my parents, my friends.  Let’s face it, T1D does guide and consume much of my thoughts, deeds, actions…it is a constant struggle to know how to balance just that and know the needs of everyone all around me are being met. I am a pancreas, this is my job, what I do/don’t do now can and will affect Kinzie in her future (and that can swing both ways). But in the midst of it all, I carry a guilt that those around me who I love do not get all of me that they so deserve and vice-versa.

I wish I could let lose a little more, but I find it hard. It has become harder, especially after our scare (which I like to dramatically call our ‘Steel Magnolias’ moment in my head).  I find myself pulling back a bit, wanting to be in the shadows where ever Kinzie goes (even if she is in good hands), high alert once more. But I guess that is human nature, and finding a new comfort zone after reality really hit our family (extended and immediate)…it is a new phase with new tactics; time will help me morph into my role as I go.

I think that sometimes I suck at time management.  I absolutely hate, hate, hate being late…but that seems to come with the territory.  Plans I make can and have changed last minute…nature of this disease (then add toddler and baby to the mix and BAM! instant time bomb to being late in various of ways).  Remaining flexible is a demand. So being late has become our norm on several occasions and it absolutely drives me nuts!!! I like to be 15 minutes early rather than 1 second late. I would love to find that once more, and think that sometimes I just don’t know where to start.

I think I could improve on my tolerance.  As tolerant as I would like to be, I must admit that ignorance can get the better part of me.  Sometimes I get sick of hearing people say ‘you can’t have sugar’, or ‘hope she out grows T1D’, or ‘When will it get stable?’  Seeing as how she has a dead organ, we cannot out grow it, nor can we do as well as a pancreas can when it comes to regulating blood glucose and her body’s ever-changing needs (stable, what is that?)…and sugar-free, well that phrase can suck my big toe.  I hate how comments like that just roll off my back the majority of the time but then some days it makes me want to stand up on my soap box once again, and educate every single person around me on T1D and just really let them know how ignorant I think they are and how un-empathetic their comments are.  Hey, I have made progress as a few years ago; those people may have walked away with a black eye and bruised ego! So thank goodness for small strides I suppose.

Sometimes T1D and make the negatives so over-whelming blaring…like huge neon signs you would see in Vegas; it can be so hard to ignore them.  My faults, weaknesses, and to-do lists seem to plague me.  I want so bad to be better than I am, but find it hard to have any time to solve/fix them or ever feel like a success when it comes to them. I always seem to have something in the back of my head telling me I am not good enough or I can do better.  Sometimes when I can’t be in two places at one time…it just sucks. Type 1 Diabetes doesn’t have to be a defining characteristic, but it absolutely has to be a priority in this house (it really does mean life or death).

I don’t want someone to walk away from this post feeling oober negative, as I would have to add that to my list, and as you can see, I do not need help in that department.  This topic just brings that tone…and reality here.  I do need to take time to stress, that along with these negatives that seem to follow me wherever I may go, there are just as many positives we celebrate.  All the small stuff counts too.  And posting this, I do not want pity, I am being honest and open…trying to paint our story as it is.  With my challenges come many blessing and many chances to increase a talent, passion or an opportunity to work on items that plague me.  My life isn’t this deep, dark, black hole of despair.  It has light, laughter, love, support, and hope in it too, more often than not. I do lead a very blessed life surrounded by amazing people and amazing examples every day.